Care and Support Services for Older People GER4CSS Module 3: Interaction between family care and service systems Semester 1, 2017 Melbourne and Distance Subject Coordinator: Karen Teshuva CONTENTS SCENARIO..............................................................................................................................1 OBJECTIVES..........................................................................................................................3 READINGS..............................................................................................................................3 INTRODUCTION...................................................................................................................4 IMPACT OF SERVICE SYSTEM FACTORS ON FAMILY CARE...............................7 CROSS-NATIONAL PATTERNS AND TYPES OF FAMILY CARE...........................7 IMPACT OF FAMILY CARE AND SERVICES ON QUALITY OF LIFE...................9 ASSESSMENT TASK .......................................................................................................... 12 REFERENCES....................................................................................................................... 13 GER4CSS Module 3 Semester 1, 2015 1 SCENARIO On loving care and the persistence of memories: Reflections of a grieving daughter1 “I can close my eyes and still see it vividly. Early Sunday morning, October 18, 1998, held the promise of a warm, sunny day with the smells of autumn just beginning and the foliage at its peak. I took a long car ride with my friends to buy some things my mother needed and to put some distance from the sadness of having been with my parents two days earlier. Taking my mother on yet another doctor’s visit had been so despairing. There was no help left for her condition, just years waiting to be lived out in slow, chronic deterioration. After the doctor’s visit, I had left her at home with her feet dangling up in the air, her body in spasm, and her face showing unspeakable grief. She had lost her life; she had lost her joy; she had lost her smile. The lines on her face, placed there by wrenching sadness and helplessness, were as raw as my own heart felt upon seeing her like this. As I drove away that Friday after dropping my parents off at their apartment, I suddenly stopped, turned around, and gave my father some Life Savers which I had in my pocket. I asked him to give them to her; she had always liked the cherry-flavoured Life Savers. At that moment, I felt it was all I had left to offer. This would be my last act of love and care for my parents…. [T]hat beautiful Sunday would not be a day full of promise and hope, as it seemed in the early morning hours; by the end of the day I would be talking to police detectives and medical examiners, making funeral arrangements for both of my parents…. …Mine is a Cuban refugee’s story, one that resembles in certain ways so many other immigrant stories…. My father, who had a major heart attack within months of his retirement, fought this unexpected setback with the resilience, perseverance, and strength he had shown in his years as a Cuban refugee. After undergoing a successful quadruple bypass surgery, he gave up fried food, attended nutrition classes, went to the gym, and took up painting as a hobby. He was the picture of health in his early seventies… …My mother’s Parkinson’s disease, diagnosed as my father recovered from his heart attack, was not met with the same sense of hope as my father’s heart problem. For him there was an almost perfect cure; there was hope of a good recovery. For her there was a life of slow and chronic deterioration until eventually, ten years after the initial diagnosis, her muscles would go one by one and she could no longer walk, feed, dress, or bathe herself… …It proved impossible to get comprehensive care for my mother; she not only had complicated and unpredictable physical symptoms but also suffered from the loss of her independence, the loss of her sense of privacy, indeed the loss of life as she had lived it…. [I]t was all fragmented care. For all those years, during which I usually went to the medical appointments with them, no one asked about her emotional wellbeing, no one considered the permanent sadness and hopelessness that overtook my father’s expressions; no one asked about the many psychological needs my parents had in facing a complicated illness like Parkinson’s… …In the early afternoon of October 18, following a well-thought-out plan, he used a gun to kill my mother, and then, positioning himself on the window ledge of the eleventh floor apartment so that he would be knocked out the window by the blast, he shot himself once in the mouth… 1 From: Gonzalez-Romos, G. (2004). On loving care and the persistence of memories: Reflections of a grieving daughter. In C. Levine & T. H. Murray (Eds.), The cultures of caregiving: Conflict and common ground among families, health professionals, and policy makers. Baltimore: John Hopkins Press. GER4CSS Module 3 Semester 1, 2015 2 [I]n the twenty letters he left behind he explains his reasoning. They had lived a long and happy life together. They had travelled and prospered, and they did not want to end their lives in slow deterioration. They wanted to die as they lived, side by side. They wanted to stop the interminable suffering… …I long for the day when the whole patient and family are placed at the centre of care; when a patient is not reduced to mere symptoms and the family caregivers are ignored; when health care is not fragmented; when professional roles are not so rigidly defined; when someone responds both to the diseases of the body and the disease of the heart and soul. I long for the day when we understand that responding to the multiple needs associated with complicated illnesses requires a team approach… …I also long for the day when the patient’s culture is recognised as one of the factors that influences how people express their illnesses and needs and that our ways of helping them must attempt to be congruent with their cultural perspective….” For Consideration How well do service providers work with family carers, in your experience? How could our systems of care in Australia be improved to take into account the physical, emotional and spiritual needs of frail older clients and the various family members involved in their care? O College of Science, Health and Engineering OBJECTIVES Psychology and Public Health Students will gain an understanding of: Patterns and types of informal care-provision• Impact of care-provision on carers• Ways in which formal and informal care systems interact• Impacts of formal and informal care systems on frail older people.• READINGS Agree, E. M., Freedman, V. A., Cornman, J. C., Wolf, D. A., & Marcotte, J. E. (2005). Reconsidering substitution in long-term care: When does assistive technology take the place of personal care? The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 60, S272–S280. Chappell, N. L., & Parmenter, G. (2005). The challenge of caregiving. In V. Minichiello & I. Coulson (Eds.), Contemporary issues in gerontology: Promoting positive ageing. Crows Nest, NSW: Allen & Unwin. Deimling, G. T., Bass, D. M., Townsend, A. L., & Noelker, L. S. (1989). Care-related stress: A comparison of spouse and adult-child caregivers in shared and separate households. Journal of Aging and Health, 1(1), 67–82. Duner, A., & Nordstrum, M. (2007). The roles and functions of the informal support networks of older people who receive formal support: A Swedish qualitative study. Ageing & Society, 27, 67–85. Geerlings, S. W., Pot, A. M., Twisk, J. W. R., & Deeg, D. J. H. (2005). Predicting transitions in the use of informal and professional care by older adults. Ageing & Society, 25, 111–130. Lowenstein, A., & Daatland, S. O. (2006). Filial norms and family support in a comparative cross-national context: Evidence from the OASIS study. Ageing & Society, 26, 203–223. Productivity Commission 2011, Caring for Older Australians, Inquiry Report, Canberra. http://www.pc.gov.au/inquiries/completed/aged-care/report Thomas, T. (2007). Migration and ageing: Australian perspectives and research. In S. Carmel, C. A. Morse & F. M. Torres-Gil (Eds.), Lessons on aging from three nations: The art of aging well (pp. 158–167). New York: Baywood. Tomassini, C., Glaser, K., Wolf, D.A., Broese van Groenou, M. I., & Grundy, E. (2004). Living arrangements among older people: An overview of trends in Europe and the USA. Population Trends, 115, 24–34. Module 3 – GER4CSS Page 4 of 18 College of Science, Health and Engineering INTRODUCTION Research has consistently demonstrated the importance of social support for the health and wellbeing of older people, both on a day-to-day-basis and during times of stress. This is true in Western nations as in other parts of the world; research in the 1970s and 1980s documented the variety and extent of social interaction during later life, debunking common assumptions that the nuclear family abandoned its older members. Despite the decline in the extended family and increased geographic distance between family members, the vast majority of older people are embedded in extensive social networks (e.g., Chappell, Gee, MacDonald, & Stones, 2003). Caregiving is a special kind of social support, and refers to support provided to older people because their health has deteriorated and they can no longer function independently. The defining characteristic of this support is the provision of assistance (Chappell & Parmenter, 2005). Informal care refers to unpaid assistance from family and friends; it has been, and remains, the mainstay of support for older people who require this assistance. In Western cultures, the co-resident spouse is the most common source of support for older people, followed by adult children, especially a daughter (e.g., Schofield et al., 1998). The Australian Bureau of Statistics (ABS) Survey of Disability Ageing and Carers (SDAC) provides useful information on carers and care needs in Australia. Of all people aged 60 years and over, less than half (41%) report needing assistance, because of disability or old age, to manage health conditions or cope with everyday activities. However, people aged 85 years and over report a much higher need for assistance than those aged 60–69 years (84% compared with 26%). Older people living in households most commonly report needing assistance with property maintenance and health care because of disability or age. Other common areas of need are transport, housework, mobility and self-care. Family and friends are the main providers of assistance, although 61% receive formal help from providers such as doctors, nurses and gardeners. Partners, sons and daughters are the most common providers of help to older people. Of the 959,400 receiving informal assistance, 452,900 (47%) are assisted by partners, who are themselves likely to be older people. Of those providing primary care for their partner, 48% are aged 65 years and older. The most common reasons given by primary carers for taking on the caring role are “family responsibility”; “could provide better care”; and “emotional obligation” (ABS, 2004). Hence, family norms regarding care are still strong and pervasive in Australia. Government policies also impact on the amount of informal caregiving that is undertaken. A user-pays philosophy results in an increasing reliance on families to provide care and assistance for their family members (de Vaus & Qu, 1997). Several studies have developed typologies of family care. A recent Scandinavian study compared the caregiving tasks undertaken by women and men (Jegermalm, 2006). Women were much more likely than men to be involved at the “heavy end” of caring, providing personal care in combination with a variety of other caring tasks. Men were more likely to provide some kind of practical help for a mother, neighbour or friend. Another recent typology resulted in removing the distinction between formal and informal care. Instead, carers were described as regular helpers, on-call helpers, can–will doers, and mainstays (Porter, Ganong, Drew, & Zanes, 2004). Caregiving can impact strongly on the wellbeing of the carer. In Australia, carers are less likely than their counterparts to be in the paid workforce (ABS, 2004). Most research on caregiving has been on negative impacts it has on health and wellbeing. Although there is considerable individual variability in response to these illness-related challenges, researchers have consistently linked the negative consequences of caregiving to a variety of factors including Module 3 – GER4CSS Page 5 of 18 College of Science, Health and Engineering patient physical disability, cognitive impairment and confusion, disruptive behaviours, and the caregiving demands engendered by these disabilities (Schulz et al., 2007). However, it would be a mistake to view the caregiving experience as uniformly harmful. Care may be provided for a range of reasons. Caregivers who are altruistically motivated help because they feel love, concern and responsibility for their relative, and wish to reduce their suffering. Caregivers who are egoistically motivated provide care to obtain rewards such as praise and respect from others, avoid censure from others or feelings of guilt, or reduce their own distress (Schultz et al., 2007). Evidence suggests that undertaking care for positive reasons results in fewer negative outcomes for carers. For example, Lyonette and Yardley (2003) found that the most significant predictors of caregiver stress are a poor relationship between the carer and care-recipient and high extrinsic motivations to care (e.g., guilt, the older person's expectation of care, and perceived disapproval of others), while the most significant predictors of caregiver satisfaction were a good relationship and high intrinsic motivations to care (e.g., the carer's resistance to other forms of care, living up to one's principles and having a caring nature). Not surprisingly, carers for older people often experience feelings both of family solidarity and interpersonal conflict between themselves and the care-recipient, leading to ambivalence about care-provision (Connidis & McMullin, 2002). Carers may also be highly ambivalent about their own unmet needs (Harding & Higginson, 2001). It would be a mistake to view all informal carers as having experiences that are the same or similar. We have already examined some variations in caregiving motivations and outcomes, and will explore these further in the remainder of this module. For Consideration What would it be like to become the carer of your spouse or parent? Perhaps you have already become an informal carer. If so, how did it happen? How did you feel about it? Module 3 – GER4CSS Page 6 of 18 College of Science, Health and Engineering Carer support and respite services As noted above, informal carers are a critical component of the support system for older people in Australia. Not only do family and others provide direct support assistance, as carers they are an important enabler of community care, without which formal care would not be sufficient for many highly impaired older people to remain at home, in the community, with maintained quality of life. For example, in 2005–06, 90% of EACH clients had a carer at the time of their assessment by an Aged Care Assessment Team (ACAT); 74% with a co-resident carer (AIHW 2007a). The need to support carers has been recognised by governments. Both carers and care recipients are eligible for support from the Commonwealth Home Support Program (CHSP). CHSP brings together four programs: Commonwealth Home and Community Care (HACC) Program• Planned respite from the National Respite for Carers Program (NRCP)• Day Therapy Centres (DTC) Program• Assistance with Care and Housing for the Aged (ACHA) Program• Carers in Australia are also eligible for government payments from Centrelink. The Carer Payment is paid to a person who provides “constant care” to a person with physical, intellectual or psychiatric disability and unable to participate fully in the workforce. This payment is income and assets tested and paid at the same rate as other pensions. The carer does not have to coreside with the care-recipient to be eligible for the Carer Payment. The Carer Allowance, on the other hand, is a supplementary allowance, and is payable to someone who lives with and provides daily care and attention to a person with a disability or medical condition. Residential respite care provides short-term accommodation and care in residential aged care homes on a planned or emergency basis. An ACAT approval is required to access residential respite care and an approval remains valid for 12 months. Module 3 – GER4CSS Page 7 of 18 College of Science, Health and Engineering IMPACT OF SERVICE SYSTEM FACTORS ON FAMILY CARE The literature on substitution in long-term care for the older population has primarily focused on trade-offs among different types of personal care in order to address the "woodwork effect"; the concern that public coverage for home care could cause a reduction in informal care (Agree, Freedman, Cornman, Wolf, & Marcotte, 2005). However, studies have generally found that formal home care does not substitute for (or crowd out) informal care, and, in many cases, it supplements informal care (Kemper, Applebaum, & Harrigan, 1987; Tennstedt, Harrow, & Crawford, 1996). Further, informal carers are facilitators of formal care provision (Geerlings, Pot, Twisk, & Deeg, 2005). Few older clients, either in Britain or the USA, receive formal care alone (Davey & Patsios, 2004). Similarly, in Australia, an analysis of the Aged Care Assessment Program (ACAP) Minimum Data Set (Howe, Doyle, & Wells, 2007)2 showed that clients with no carer are less likely to be using services than clients with a carer, and clients with co-resident carers are the group most likely to be using Home and Community Care (HACC) and Community Aged Care Packages (CACPs). In a North American study of informal carers, Cohen, Miller, and Weinrobe (2001) found that whether or not formal care substitutes for informal care is related to the demographics of the caregiver. For adult children it is more common for formal care to substitute for informal care, but this is not generally the case for spouses. Paid help provides complementary help to unpaid caregivers. Where the informal caregiver provides eight hours per week or less of help with activities of daily living (ADLs), paid help also tends to be low, but where the informal caregiver is providing large amounts of ADL help, paid help is also used for large blocks of time. In circumstances where formal assistance substitutes for informal care, increasing the provision of community care is a suggested measure for encouraging workforce participation in women currently providing informal care outside the household (Viitanen, 2007). One kind of informal care that has received relatively little attention is that of care management. Care management refers to care-related discussions with other family members or the care recipient about arrangements for formal services and financial matters, doing relevant paperwork, and seeking information. This kind of caregiving is common, and most caregivers provide both managerial and direct care (Rosenthal, Martin-Matthews, & Keefe, 2007). Much less attention has been paid to where the cultures of the formal and informal sectors clash. A gulf may develop between the ways in which families perceive the task of care-provision for someone who is sick or disabled and the way in which professional carers approach the task (Levine & Murray, 2004). This gulf can lead to mutual incomprehension, disagreements, and even conflict. At worst, professionals ignore families’ perceptions and preferences, while families fail to comply with health care directions; professional carers perceive well-meaning family carers as interfering, while family carers see professionals as uncaring and unsympathetic, and each views the other as incompetent. This is a problem particularly where formal care is highly medicalised and removed from everyday experience. CROSS-NATIONAL PATTERNS AND TYPES OF FAMILY CARE3 For Consideration 2 Howe, A., Doyle, C., & Wells, Y. (2006). Targeting in community care: A review of recent literature and analysis of the Aged Care Assessment Program Minimum Data Set. Unpublished report to the Australian Department of Health and Ageing, Canberra. 3The author is indebted to Chen (2007) for some of the material that appears in this chapter. Module 3 – GER4CSS Page 8 of 18 College of Science, Health and Engineering What cultural variations in caregiving practices and beliefs are important in Australia? How might you deal with such variations in the place where you work? Caregiving motivations and outcomes vary by a range of cultural factors, including cultural background. Australia is one of the most multicultural countries in the world, with citizens from about 200 nations and speaking 200 identifiable languages (Thomas, 2007). Australia has a relatively high proportion of elderly immigrants from ethnic minority groups. In 1996, approximately 18% of Australians aged 65 or over (392,800 people) were from a culturally and linguistically diverse (CALD) background. By 2011, it is estimated that this group will number 653,800 people, or 22.5% of the total older Australian population (Australian Institute for Health & Welfare [AIHW], 2004). Cultural values affect carers’ experiences of caring, including their perceptions of dementia and their caregiving practices, as well as their help-seeking and coping behaviour. While most crosscultural research on caregiving—especially for dementia—has been carried out in the US, there have been a few studies in Australia (e.g., Gelfand & McCallum, 1994; Hsiao, Klimidis, Minas, & Tan, 2006; Tan, Fleming, & Ledwidge, 2001; Thomas, 1999). In Europe, large differences are evident between countries in attitudes towards co-residence with an older person and residential care. Living with offspring is much more common in the southern countries, while residential care is more frequent in the northern nations (Tomassini et al., 2004). Filial obligation—the obligation to care for parents—also varies between countries, and is more prescriptive in southern Europe (and Israel) than in the northern countries, where intergenerational exchanges are more open to negotiation (Lowenstein & Daatland, 2006). The preferred model for elder care is a combination of family and state responsibility (Lowenstein & Ogg, 2003). It is often assumed that family support can be relied upon in developing nations. However, Phillips (2000) has identified the care of older people as one of the most urgent problems arising from population ageing in the Asia–Pacific, and has warned of the potential dangers of relying on informal and family support. Van Eewijk (2006) described the situation of frail older people in urban areas of Indonesia as a “triangle of uncertainty”, with social, economic and health dimensions. Connell and Gibson (1997) provided a review and analysis of the empirical research published in the US since 1985, examining the impact of race, culture, or ethnicity on the dementia caregiving experience. They found that in comparison with carers from an Anglo background, non–Anglo American carers are less likely to be a spouse and more likely to be an adult child, friend, or other family member. In addition, non–Anglo American carers report lower levels of carer stress, burden and depression, and endorse beliefs about filial support more strongly. Another more recent review (Janevic & Connell, 2001), including studies published between 1996 and 2000, confirmed that Anglo–American carers are more likely than carers from other groups to be spouses. They tend to report greater depression and to appraise caregiving as being more stressful than do carers from ethnic minorities, while ethnic minorities derive more benefit and meaning from the experience of caregiving than do Anglo–American carers. Evidently, cultural factors may be a major determinant of the level of carer burden in minority groups. Shaw et al. (1997) compared coping strategies and depression among family carers of people with Alzheimer’s disease in Shanghai, China, and San Diego, California. The Chinese carers reported fewer symptoms of depression and anxiety than their American counterparts, supporting the view that the caregiving role might lead to greater distress in Western than in Module 3 – GER4CSS Page 9 of 18 College of Science, Health and Engineering Eastern cultures, perhaps because family caregiving is perceived as more normative in Eastern cultures. In contrast, studies comparing caregiving outcomes of carers from a Korean background with those of White American carers found that Korean carers are the most depressed of the three (Korean, Korean American, and White American) cultural groups (Lee & Farran, 2004; Youn, Knight, Jeong, & Bentonl, 1999). These studies concluded that the traditional Korean family requires family carers (mainly daughters-in-law) to take on almost the entire responsibility for their elders with dementia. A lack of social and governmental support may be one of the main reasons leading Korean carers to report higher levels of depression. Also, Korean daughter-inlaw carers have been shown to be more motivated by filial respect and filial sacrifice than American carers, but have less affectionate relationships with their care recipients. Cultural and structural factors might also determine whether carers from ethnic minorities will seek help from various sources (Guberman & Maheu, 2004). For instance, language barriers and lack of cultural sensitivity on the part of health care practitioners act as barriers preventing ethnic minority family carers from seeking outside help (Ho, Weizman, Cui, & Levkoff, 2000). Guberman and Maheu concluded that cultural and structural factors cannot be disassociated, since they are in constant interaction in the very decision to use one form of help rather than another. When Vietnamese American carers are in need of help, they often turn to other relatives, usually women, to assist with “hands-on” care, to avoid having to receive help from outsiders (Yeo, Uyen Tran, Hikoyeda, & Hinton, 2001). Families avoid using formal services because of concerns about shame and “loss of face” within the community and among peers, since the traditional Vietnamese view is that dementia is a mental illness. This view is particularly widely held among less acculturated Vietnamese carers with poor skills in English (Yeo et al., 2001). The motivation of these families is to prevent their elder’s condition from becoming more widely known. Perceptions of dementia are particularly problematic. Ethnic minorities are unlikely to refer to dementia as a physical illness; instead they normalise it and see it as a result of ageing, mental illness, or fate. Asian and Pacific Islander Americans (APIA) often view dementia as normative ageing (Braun & Browne, 1998). Yeo et al. (2001) conducted interviews with six Vietnamese American carers to understand their conceptions about dementia. The results revealed a diversity of meanings for dementia including normal ageing, “physical factors”, “psychiatric factors”, and influences related to spiritual beliefs or fate (Yeo et al.). Similarly, in the Japanese American community, dementia is associated with considerable social stigma, since it is considered a mental illness rather than a physical condition, and many individuals with dementia experience hallucinations, paranoia, and disorientation (Kinoshita & Gallagher-Thompson, 2004). Among Chinese carers, strong social stigma associated with dementia can lead to social isolation (Ho et al., 2000). IMPACT OF FAMILY CARE AND SERVICES ON QUALITY OF LIFE Impacts of informal support Social support and caregiving were the focus of much psychosocial research in the 1990s, reinforcing the view that social support serves key functions in the lives of elderly people and their families. It protects older people’s health (Roberto, 1992; Samuelsson & Dehlin, 1993) and psychological wellbeing (Barrett, 1999; Newsom & Schulz, 1996). Using data from an Australian longitudinal study, Joyce (2002, in Browning, Wells, & Joyce, 2005) found that social activity and social support made important contributions to emotional health. Social support also acts as a buffer against the negative effects of stressful situations. For example, in a study from the US of support and stressors among Black older adults, women's (but not men's) level of depression was higher when they had reduced contact with family and friends in the face of increased Module 3 – GER4CSS Page 10 of 18 College of Science, Health and Engineering instances of life stressors than when they had sufficient contact (Husaini et al., 1991). An Australian review (Kendig & Brooke, 1997) suggested that morale is related to the quality, rather than the quantity, of social interaction. However, not all social exchanges are positive. Just as positive exchanges are associated with positive affect, negative exchanges are associated with negative affect, particularly when experiencing other stressors (Ingersoll-Dayton, Morgan, & Antonucci, 1997). Krause (1995) contributed a series of studies on negative aspects of family support, including the extent to which certain kinds of stressors might promote isolation rather than receipt of support. In a more recent qualitative study, Hunt and Robbins (2001) explored the different roles that social support can play—both as a buffering and as a monitoring mechanism—in older World War II (WWII) veterans in the UK. Twenty-five WWII male veterans who had experienced heavy combat or been prisoners of war were interviewed. These men used social support as a coping strategy in a variety of ways. Even 50 years later, war comrades were still a valuable resource for discussing war experiences and dealing with traumatic recollections. Veterans relied on wives and families to help deal with the more physical and practical elements of coping but tended not to discuss their traumatic memories with them. With advancing age, veterans’ need for social support appeared to increase. For Consideration Social isolation among old people has been referred to as something that should be addressed by government. To what extent do you think social isolation is a family or community issues versus an aged care services issue? Impacts of receiving care from formal sources Qualitative studies of quality of life and community care services consistently point to the relief that clients feel when provided with some support (Howe et al., 2006). While receiving community care services does not impact directly on the quality of life of the client (because of the moderating effects of a range of other factors), evidence suggests that use of community services contributes to improved quality of life, and in general those who receive community services have been found to be very satisfied with them. To the extent that improvements in functioning lead to improvements in quality of life, it can be inferred that service use that leads to such outcomes also leads to improved quality of life. The literature also highlights the importance of small amounts of service such as a weekly car trip, particularly to isolated, frail older people. Many studies have examined the impacts of formal support on informal carers for older people. Psychological and social outcomes that have been studied in association with receiving community services include carer burden, depression, anxiety, and client satisfaction. The overall picture is that positive benefits can be had from community care, especially when use of services is regular and sustained. In a review (Zarit, Gaugler, & Jarrett, 1999), in-home respite was found to improve carers’ mood, decrease stress and decrease time spent in caring activities. Unmet need is the alternative to use of formal and informal support. While few studies of unmet need have included quality of life measures, the consequences of not receiving needed services are wide-ranging. In a study by Desai, Lentzner, and Weeks (2001), negative consequences were reported by half of those with unmet need; these negative consequences included discomfort from Module 3 – GER4CSS Page 11 of 18 College of Science, Health and Engineering being unable to bathe as often as the client would have liked to, restriction in mobility inside and going out, avoidable incontinence, accidents such as burns and falls, and going hungry. Such consequences may go unnoticed or unattended when individuals have no contact with services. An important benefit of early contact with the service system is that it offers the prospect of needs being recognised and addressed before a crisis occurs. LaPlante, Kang, Kaye, & Harrington (2004) reported that, in comparison with older people with no unmet needs, those with unmet needs are far less satisfied with their care, mainly in terms of carer availability and amount of assistance given, but also with lack of back-up help. The serious problems experienced by those with unmet need compromise their safety, comfort, and hygiene; reducing their ability to live in the community and increasing their risk of institutionalisation and possibly death. Lima and Allen (2001) observed that adverse consequences occur with inadequate help as well as with no help. They called for expanding publicly funded community care to a level sufficient to meet individual need and to re-examine eligibility criteria to ensure that allotted care is not too little, too late, when residential aged care may become the only option. For Consideration What sorts of supports would you like to operate when you are a frail older person and need some assistance? Would you want your family to care for you or would you prefer to use formal services? Might your choice differ for different tasks? Combination of formal and informal care One would expect that the better the relationship between formal and informal sources of support, the better they jointly meet the needs of frail older people; however, very little evidence exists on the impact of both family care and formal care on the quality of life of frail older people. Scandinavian research has shown that older people who need help in their everyday lives use both formal and informal sources to maintain control over their situation and to reduce feelings of dependency (Duner & Nordstom, 2005). When certain formal services are provided, informal carers may carry out complementary tasks, leading to a greater coverage of the person’s needs (Daatland & Herlofson, 2003). Among very old Swedes (aged 75 or over), quality of life is not related to whether the source of help is formal or informal; rather, health status determines quality of life (Hellstrom & Hallberg, 2004). Another Scandinavian study indicated that older people adapt to what is available to them. If they consider their relatives to have time and ability to help them, they use them for support; however, formal care may be preferred, when available. Having access to both formal and informal support is sometimes a prerequisite of managing independent living. Access to both sources of support gives older people the capacity to choose between those sources of support and makes them equal participants in negotiations about their care and support. This enables them to remain in control of their situation, even when they are dependent on support in their everyday life (Duner & Nordstrum, 2005, 2007). Module 3 – GER4CSS Page 12 of 18 College of Science, Health and Engineering ASSESSMENT TASK Module 3: Exercises 3 (250 words) Topic: Interaction between family care and aged care services Exercise 3.1 How does the provision of formal assistance affect informal care? Guiding questions: Do informal carers withdraw their help when formal services are offered? How can formal and informal care systems work well together? How can they clash? How does the provision of formal assistance affect informal care? Readings for Exercise 3.1 Chappell, N. L., & Parmenter, G. (2005). The challenge of caregiving. In V. Minichiello & I. Coulson (Eds.), Contemporary issues in gerontology: Promoting positive ageing. Crows Nest, NSW: Allen & Unwin. Deimling, G. T., Bass, D. M., Townsend, A. L., & Noelker, L. S. (1989). Care-related stress: A comparison of spouse and adult-child caregivers in shared and separate households. Journal of Aging and Health, 1(1), 67–82. Duner, A., & Nordstrum, M. (2007). The roles and functions of the informal support networks of older people who receive formal support: A Swedish qualitative study. Ageing & Society, 27, 67–85. Productivity Commission 2011, Caring for Older Australians, Inquiry Report, Canberra. http://www.pc.gov.au/inquiries/completed/aged-care/report/aged-care-volume2.pdf Chapter 13 Exercise 3.2 How do patterns of informal care vary between countries and cultures, and how are these affected by national policies and norms and beliefs about care? Readings for Exercise 3.2 Geerlings, S. W., Pot, A. M., Twisk, J. W. R., & Deeg, D. J. H. (2005). Predicting transitions in the use of informal and professional care by older adults. Ageing & Society, 25, 111–130. Lowenstein, A., & Daatland, S. O. (2006). Filial norms and family support in a comparative crossnational context: Evidence from the OASIS study. Ageing & Society, 26, 203–223. Thomas, T. (2007). Migration and ageing: Australian perspectives and research. In S. Carmel, C. A. Morse & F. M. Torres-Gil (Eds.), Lessons on aging from three nations: The art of aging well (pp. 158–167). New York: Baywood. Tomassini, C., Glaser, K., Wolf, D. A., Broese van Groenou, M. I., & Grundy, E., (2004). Living arrangements among older people: An overview of trends in Europe and the USA. Population Trends, 115, 24–34. Module 3 – GER4CSS Page 13 of 18 College of Science, Health and Engineering REFERENCES Agree, E. M., Freedman, V. A., Cornman, J. C., Wolf, D. A., & Marcotte, J. E. (2005). Reconsidering substitution in long-term care: When does assistive technology take the place of personal care? The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 60, S272–S280. Australian Bureau of Statistics. (ABS). (2004). Disability, ageing and carers, Australia: Summary of findings, 2003. Catalogue 4430.0. Retrieved May 31, 2008, from http://www.abs.gov.au/ausstats/[email protected]/7d12b0f6763c78caca257061001cc588/c258c88a7aa5a87eca 2568a9001393e8!OpenDocument Australian Institute of Health and Welfare. (AIHW). (2004). Diversity among older Australians in capital cities 1996–2011. Retrieved June 2, 2008, from http://www.aihw.gov.au/publications/aus/bulletin18/bulletin18.pdf Barrett, A. E. (1999). Social support and life satisfaction among the never married. Research on Aging, 21, 46–72. Braun, K. L., & Browne, C. V. (1998). Perceptions of dementia, caregiving and help seeking among Asian and Pacific Islander Americans. Health and Social Work, 23(4), 262–277. Browning, C., Wells, Y. & Joyce, A. (2005). The experience of ageing: Influences on mental health and wellbeing. In V. Minichiello & I. Coulson, (Eds.), Contemporary issues in gerontology: Promoting positive ageing (pp. 53–77). Sydney: Allen and Unwin and Routledge. Chappell, N. L., Gee, E., MacDonald, L., & Stones, M. (2003). Aging in Contemporary Canada. Toronto: Pearson Educational. Chappell, N. L., & Parmenter, G. (2005). The challenge of caregiving. In V. Minichiello & I. Coulson, (Eds.), Contemporary issues in gerontology: Promoting positive ageing (pp. 53–77). Sydney: Allen and Unwin. Chen, C.-L. (2007). Comparison of Chinese-Australian and Australian-born carers’ experiences of caring for a family member with dementia at home. Unpublished Masters thesis, La Trobe University, Victoria, Australia. Cohen, M. A., Miller, J., & Weinrobe, M. (2001). Patterns of informal and formal caregiving among elders with private long-term care insurance. The Gerontologist, 41, 180–187. Connell, C. M., & Gibson, G. D. (1997). Racial, ethnic, and cultural differences in dementia caregiving: Review and analysis. The Gerontologist, 37(3), 355–364. Connidis, I. A., & McMullin, J. A. (2002). Ambivalence, family ties, and doing sociology. Journal of Marriage and Family, 64(3), 594–601. Daatland, S. O., & Herlofson, K. (2003). ‘Lost solidarity’ or ‘changed solidarity’: A comparative European view of normative family solidarity. Ageing & Society, 23, 537–60. Davey, A., & Patsios, D. (1999). Formal and informal community care to older adults: Comparative analysis of the United States and Great Britain. Journal of Family and Economic Issues, 20, 271–299. Deimling, G. T., Bass, D. M., Townsend, A. L., & Noelker, L. S. (1989). Care-related stress: A comparison of spouse and adult-child caregivers in shared and separate households. Journal of Aging and Health, 1(1), 67–82. Desai, M. M., Lentzner, H. R., & Weeks, J. D. (2001). Unmet need for personal assistance with activities of daily living among older adults. The Gerontologist, 41, 82–88. de Vaus, D., & Qu, L. (1997). Intergenerational transfers across the life course in Australia. Bulletin on Ageing, 2/3, 12–20. Duner, A., & Nordstrom, M. (2005). Intentions and strategies among elderly people: Coping in everyday life. Journal of Aging Studies, 19, 437–51. Module 3 – GER4CSS Page 14 of 18 College of Science, Health and Engineering Duner, A., & Nordstrum, M. (2007). The roles and functions of the informal support networks of older people who receive formal support: A Swedish qualitative study. Ageing & Society, 27, 67–85. Geerlings, S. W., Pot, A. M., Twisk, J. W. R., & Deeg, D. J. H. (2005). Predicting transitions in the use of informal and professional care by older adults. Ageing & Society, 25, 111–130. Gelfand, D. E., & McCallum, J. (1994). Immigration, the family, and female caregivers in Australia. Journal of Gerontological Social Work, 22(3/4), 41–59. Gonzalez-Romos, G. (2004). On loving care and the persistence of memories: Reflections of a grieving daughter. In C. Levine & T. H. Murray (Eds.), The cultures of caregiving: Conflict and common ground among families, health professionals, and policy makers. Baltimore: John Hopkins Press. Guberman, N., & Maheu, P. (2004). Beyond cultural sensitivity: Universal issues in caregiving. Generations, 27(4), 39–45. Harding, R., & Higginson, I. (2001). Working with ambivalence: Informal caregivers of patients at the end of life. Supportive Care in Cancer, 9, 642–645. Hellstrom, Y., & Hallberg, I. R. (2004). Determinants and characteristics of help provision for elderly people living at home and in relation to quality of life. Scandinavian Journal of Caring Sciences, 18, 387–395. Ho, C. J., Weitzman, P. F., Cui, X., & Levkoff, S. E. (2000). Stress and service use among minority caregivers to elders with dementia. Journal of Gerontological Social Work, 33(1), 67–88. Hsiao, F.-H., Klimidis, S., Minas, H. I., & Tan, E. S. (2006). Folk concepts of mental disorders among ChineseAustralian patients and their caregivers. Journal of Advanced Nursing, 55(1), 58–67. Hunt, R., & Robbins, I. (2001). World War II veterans, social support, and veterans' associations. Aging and Mental Health, 5(2), 175–182. Husaini, B. A., Moore, S. T., Castor, R. S., Neser, W., Whitten-Stovall, R., Linn, J. G., & Griffin, D. (1991). Social density, stressors, and depression: Gender differences among the Black elderly. Journal of Gerontology: Psychological Sciences, 46, P236–P242. Ingersoll-Dayton, B., Morgan, D., & Antonucci, T. C. (1997). The effects of positive and negative social exchanges on aging adults. Journal of Gerontology: Social Sciences, 52, S190–S199. Janevic, M. R., & Connell, C. M. (2001). Racial, ethnic, and cultural differences in the dementia caregiving experience: Recent findings. The Gerontologist, 41(3), 334–347. Jegermalm, M. (2006). Informal care in Sweden: A typology of care and caregivers. International Journal of Social Welfare, 15 (4), 332–343. Jenkins, A., Rowland, F., Angus, P., & Hales, K. (2003). The future supply of informal care 2003 to 2013: Alternative scenarios. A report jointly funded by the Australian Government Department of Health and Ageing and the Australian Institute of Health and Welfare. AIHW Cat. No. AGE 32. Canberra: AIHW Kemper, P. Applebaum, R., & Harrigan, M. (1987). Community care demonstrations: What have we learned? Health Care Financing Review, 8, 87–100. Kendig, H., & Brooke, L. (1997). Australian research on ageing and social support. Australasian Journal on Ageing, 16, 127–130. Kinoshita, L. M., & Gallagher-Thompson, D. (2004). Japanese American caregivers of individuals with dementia: An examination of Japanese cultural values and dementia caregiving. Clinical Gerontologist, 27(1/2), 87–102. Krause, N. (1995). Negative interaction and satisfaction with social support among older adults. Journal of Gerontology: Psychological Sciences, 50, P59–P73. 1995 Module 3 – GER4CSS Page 15 of 18 College of Science, Health and Engineering LaPlante, M. P., Kang, T., Kaye, H.S., & Harrington, C. (2004). Unmet need for personal assistance services: Estimating the shortfall in hours of help and adverse consequences. Journals of Gerontology B: Psychological Sciences and Social Sciences, 59, S98–S108. Lee, E. E., & Farran, C. J. (2004). Depression among Korean, Korean American, and Caucasian American family caregivers. Journal of Transcultural Nursing, 15(1), 18–25. Levine, C., & Murray, T. H. (Eds.). (2004). The cultures of caregiving: Conflict and common ground among families. Baltimore: Johns Hopkins University Press. Lima, J. C., & Allen, S. M. (2001). Targeting risk for unmet need not enough help versus no help at all. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 56, S302–S310. Lowenstein, A., & Daatland, S. O. (2006). Filial norms and family support in a comparative cross-national context: Evidence from the OASIS study. Ageing & Society, 26, 203–223. Lowenstein, A., & J. Ogg (Eds.). (2003). OASIS Final report. Haifa: University of Haifa. Retrieved June 4, 2008 from http://oasis.haifa.ac.il/downloads/oasis-final-report.pdf Lyonette, C., & Yardley, L. (2003). Influence on carer wellbeing of motivations to care for older people and the relationship with the care recipient. Ageing & Society, 23(4), 487–506. McCamish-Svernsson, C., Samuelsson, G., Hagberg, B., Svensson, T., & Dehlin, O. (1997). Informal and formal support from a multi-disciplinary perspective: A Swedish follow-up between 80 and 82 years of age. Health and Social Care in the Community, 7, 163–176. Newsom, J. T., & Schulz, R. (1996). Social support as a mediator in the relationship between functional status and quality of life in older adults. Psychology and Aging, 11, 34–44. Porter, E. J., Ganong, L. H., Drew, N., & Lanes, T. I. (2004). A new typology of home-care helpers. The Gerontologist, 44(6), 750–759.Productivity Commission 2011, Caring for Older Australians, Inquiry Report, Canberra. http://www.pc.gov.au/inquiries/completed/aged-care/report/aged-care-volume2.pdf Chapter 13 Roberto, K. A. (1992). Coping strategies of older women with hip fractures: Resources and outcomes. Journal of Gerontology: Psychological Sciences, 47, P21–P26. Rosenthal, C. J., Martin-Matthews, A., & Keefe, J. M. (2007). Care management and care provision for older relatives amongst employed informal care-givers. Ageing & Society 27, 755–778. Samuelsson, G., & Dehlin, O. (1993). Family network and mortality: Survival chances through the lifespan of an entire age cohort. International Journal of Aging and Human Development, 37, 277–295. Schofield, H., Bloch, S., Herrman, H., Murphy, B., Nankervis, J., & Singh, B. (1998). Family caregivers: Disability, illness and ageing. Melbourne: Victorian Health Promotion Foundation and Allen & Unwin. Schulz, R., Hebert, R. S., Dew, M. A., Brown, S. K., Scheier, M. F., Beach, S. R., et al. (2007). Patient suffering and caregiver compassion: New opportunities for research, practice, and policy. The Gerontologist, 47(2), 4–14. Shaw, W. S., Patterson, T. L., Semple, S. J., Grant, I., Yu, E. S. H., Zhang, M. Y., et al. (1997). A cross-cultural validation of coping strategies and their associations with caregiving distress. The Gerontologist, 37(4), 490–504. Tan, L., Fleming, A., & Ledwidge, H. (2001). The caregiving burden of relatives with dementia: Experiences of Chinese-Australian families. Geriaction, 19(1), 10–16. Tennstedt, S., Harrow, B. S., & Crawford, S. (1996). Informal care vs. formal services: Changes in patterns of care over time. Journal of Aging and Social Policy, 7, 71-91. Module 3 – GER4CSS Page 16 of 18 College of Science, Health and Engineering Thomas, T. (1999). Stress, coping, and the mental health of older Vietnamese migrants. Australian Psychologist 34(2), 82–86. Thomas, T. (2007). Migration and ageing: Australian perspectives and research. In S. Carmel, C. A. Morse & F. M. Torres-Gil (Eds.), Lessons on aging from three nations: The art of aging well (pp. 158–167). New York: Baywood. Tomassini, C., Glaser, K., Wolf, D. A., Broese van Groenou, M. I., & Grundy, E. (2004). Living arrangements among older people: An overview of trends in Europe and the USA. Population Trends, 115, 24–34. van Eeuwijk, P. (2006). Old-age vulnerability, ill-health and care support in urban areas of Indonesia. Ageing & Society, 26, 61–80. Viitanen, T. (2007). Informal and Formal Care in Europe. Retrieved 12 June 2008, from http://www.iza.org/index_html?lang=de&mainframe=http%3A//www.iza.org/de/webcontent/publication s/papers/viewAbstract%3Fdp_id%3D2648&topSelect=publications&subSelect=papers Yeo, G., Uyen Tran, J. N., Hikoyeda, N., & Hinton, L. (2001). Conceptions of dementia among Vietnamese American caregivers. Journal of Gerontological Social Work, 36, 131–152. Youn, G., Knight, B. G., Jeong, H.-S., & Benton, D. (1999). Differences in familism values and caregiving outcomes among Korean, Korean American, and white American dementia caregivers. Psychology and Aging, 14(3), 355–364. Zarit, S., Gaugler, J. E., & Jarrott, S. E. (1999). Useful services for families: Research findings and directions. International Journal of Geriatric Psychiatry, 14, 165–181. Care and Support Services for Older People GER4CSS Module 4: Care and support services for older people with special needs Semester 1, 2017 Melbourne and Distance Subject Coordinator: Karen Teshuva CONTENTS READINGS..............................................................................................................................4 SCENARIO..............................................................................................................................5 OBJECTIVES..........................................................................................................................7 INTRODUCTION...................................................................................................................8 OLDER PEOPLE FROM CULTURALLY AND LINGUISTICALLY DIVERSE BACKGROUNDS.................................................................................................................. 10 ABORIGINAL AND TORRES STRAIT ISLANDER ELDERS .................................. 14 FINANCIALLY OR SOCIALLY DISADVANTAGED OLDER PEOPLE .................. 16 OLDER PEOPLE IN REMOTE AND RURAL COMMUNITIES................................. 16 WAR VETERANS................................................................................................................. 17 BUILDING CULTURALLY COMPETENT AGED CARE SERVICES........................ 17 ASSESSMENT TASK .......................................................................................................... 20 REFERENCES....................................................................................................................... 21 This material has been written by staff of the Australian Institute for Primary Care and Ageing for teaching purposes Karen Teshuva, Yvonne Wells, and Mary Caruana Module 4 – GER4CSS Page 4 of 22 College of Science, Health and Engineering READINGS Atwell, R., Correa-Velez, I., & Gifford, S. (2007). Ageing out of place: Health and well-being needs and access to home and aged care services for recently arrived older refugees in Melbourne, Australia. International Journal of Migration, Health and Social Care, 3(1), 4–14. Australian Housing and Urban Research Institute. (AHURI). (2005). Housing and support options for older people who are homeless. AHURI Research & Policy Bulletin, Issue 61(August). Bin-Sallik, M. A., & Ranzijn, R. (2001). Report on a scoping study into the needs of Indigenous aged care in South Australia. College of Indigenous Education, University of South Australia for Aged Care Housing Group. Chan, D. K. Y., Ong, B., Zhang, K., Li, R., Liu, J. G., Iedema, R., et al. (2003). Hospitalisation, care plans and not for resuscitation orders in older people in the last year of life. Age and Ageing, 32, 445–449. Davy., Bridge, C., Judd, B.; Flatau, P., Morris, A., & Phibbs, P. (2010). Age-specific housing for low to moderate-income older people. Australian Housing and Urban Research Institute. AHURI Positioning Paper No. 134. http://www.ahuri.edu.au/research/final-reports/174 Ethnic Communities’ Council of Victoria. (2007). A proposal for an ageing and cultural diversity strategy. Retrieved 9 Feb. 11, from Ethnic Communities Council of Victoria http://www.eccv.org.au/aged-care/aged-care-policy/ Radermacher H., Feldman, S. and Browning C. (2008) Review of literature concerning the delivery of community aged care services to ethnic groups. Mainstream versus ethno-specific services: It’s not an ‘either or’. Prepared for Ethnic Community Council of Victoria Rao, D. V., Warburton, J., & Bartlett, H. (2006). Health and social needs of older Australians from culturally and linguistically diverse backgrounds: Issues and implications. Australasian Journal on Ageing, 25 (4), 174–175. Rowland, D. (2007). Ethnicity and ageing. In A. Borowski, S. Encel, & E. Ozanne (Eds.), Longevity and social change in Australia. Sydney: UNSW Press. Module 4 – GER4CSS Page 5 of 22 College of Science, Health and Engineering SCENARIO The following address “Language, Diversity and Casablanca”, was delivered by author Dr Arnold Zable at the Cultural Diversity in Ageing 2007 National Conference. “A week before my mother died, I made my way along the corridor towards the hospital ward in which she lay and stopped, abruptly, in the doorway, arrested by the sight of her seated in a wheelchair. Behind her stood a trainee nurse, combing her hair. Mother and the nurse were silhouetted by the rays of the mid-morning sun radiating through the windows. And mother, 85 years old, was in a reverie as the teenage nurse continued her gentle combing. Strangers just days earlier, in this moment they seemed as one. And mother was singing, softly, inaudibly almost. As I stepped closer I could hear the words take shape: You must remember this A kiss is but a kiss A sigh is just a sigh The fundamental things apply As time goes by. Yes, a lifetime had flown. She who had lost her family and loved ones at the hands of the Nazis was nearing the end of a long and tumultuous life. And she was singing, As Time Goes By, word perfect. She knew the entire song by heart, while her frail voice, trained six decades earlier by Yiddish choirmasters in Eastern Poland, held fast. My mother was one of countless immigrants who have come to love this country with a passion, a love born of gratitude for having had the chance to begin life anew after the ravages of the past. And she gave back as much as she received. She worked for years in clothing factories and late at night, hunched over her sewing machine, as she stitched together garments for local manufacturers. Yet she did not know a word of English when she arrived. She did, however, speak five other languages: Polish, Russian, Yiddish, German and ancient Hebrew. Like many immigrants she was multi-lingual, and one of the many who have increased our ability to communicate with the world. She brought us her melodies, her culture, her knowledge, and willingness to work hard. And, she learnt the sixth language quickly. When she sang on her deathbed, I realised that one of the ways she had acquired English was by going to the movies. She told me later she had seen Casablanca many times. Yes, learning English is important, and, like my mother, most immigrants are desperate to learn the new language quickly. Yet, too little thought has been given to the other side of the equation: to languages that immigrants already possess. Each language is a world unto itself, and each enriches the host language. English has thrived in multi-lingual environments. The death of any language represents a loss for us all. Countless Aboriginal languages have been lost since the European invasion. While efforts to increase English language proficiency among Indigenous peoples may be welcome, if enforced at the expense of respect and resources for Indigenous languages, it would represent yet another form of dispossession. Module 4 – GER4CSS Page 6 of 22 College of Science, Health and Engineering In recent years there has been an alarming fall in time devoted to the teaching of languages other than English. According to Anne Pauwels, professor of linguistics at the University of Western Australia, the number of languages taught at Australian universities has fallen from 66 to 25 in the past decade, while the percentage of year 12 students graduating with a second language has fallen from 40 per cent to as low as 6 per cent in Queensland. We are, it seems, retreating from our linguistic diversity, and from our appreciation of the 180 languages that immigrants speak here. Yet, there is a language that goes beyond words, the language of silent communion that flowed between mother and the nurse. The young nurse worked intuitively. Her eyes did not see difference. She was unafraid of this aged woman who had, just nights earlier, retreated to the ghosts of the past, imagining that she was being stalked by Hitler's henchmen. "They were here again last night," she had told me. "I heard them plotting. They were whispering and pointing in my direction." They drew close in those final days, mother and the nurse. In her hands mother felt safe. The nurse spoke a universal language in which the fundamental things apply: compassion, friendship and the joy of welcoming. And she received something in return. The nurse had never heard of Casablanca. After all, it was made three decades before she was born. When she mentioned the film to her father after work that night, his eyes lit up. The next day he located it in a video shop, and they watched it together. She loved it, of course.” For Consideration How prepared are our mainstream aged care services to respond to the many service delivery questions posed by a multicultural ageing population? What personal qualities do you consider valuable for health and aged care professionals working with a multicultural ageing population? Module 4 – GER4CSS Page 7 of 22 College of Science, Health and Engineering OBJECTIVES Students will gain an understanding of: Special needs of older people from culturally and linguistically diverse populations.• The barriers to accessing aged care services for older people from special needs groups.• The challenges for equitable delivery of aged care services for older people from special needs• groups. Students will also gain: Competence for practice with diverse populations.• Capacity for critical self-awareness with respect to attitudes towards special needs groups.• Module 4 – GER4CSS Page 8 of 22 College of Science, Health and Engineering INTRODUCTION The Australian Government Aged Care Act recognises that some people have special needs. These are specified by the Act as including Aboriginal and Torres Strait Islander people, people living in rural and remote communities, people from non-English speaking backgrounds, people who are financially or socially disadvantaged, and veterans (including a spouse, widow, or widower of a veteran). While older people from special needs groups can access and benefit from the same funding and services as frail older people generally, their social and cultural circumstances can place them in a position of disadvantage in comparison with the general older population. For this reason, the Australian Government Aged Care Act specifies that special needs groups must be taken into account during the annual allocation of new residential places and community care packages each year (Department of Health and Ageing [DoHA], 2006). The focus of this module is the provision of aged care and support for Australia’s special needs groups. It gives an overview for each special needs group of: Factors that influence older people’s health and wellbeing• Provision of aged care and support services• Aged care service utilisation• Barriers for accessing aged care services.• Finally, the module examines a framework for building a culturally competent aged care system to meet the needs of Australia’s ageing and increasingly diverse population. Australia is a multi-ethnic country made up of almost 200 different ethnic groups. According to Rowland (2007) CALD special needs originate from the importance to the ethnic aged of their distinct cultural and social circumstances. Special needs status recognises that cultural beliefs, migration experience and language affect how people communicate their health problems, the way they seek help, and their families’ attitudes towards formal aged care services. Many of the needs of Indigenous Australians are considered to be very different from those of the wider community by reason of their poor life expectancy and higher risk of poor health. While the needs of indigenous Australians are well-documented (DoHA, 2007; AIHW, 2008), the specific needs of Aboriginal elders have only been recognised in recent years. In 1997, the Victorian Parliament Family and Community Development Committee reported that aged care policies developed for non-Aboriginal people may not be appropriate when working with Aboriginal elders. The report pointed out that non-Aboriginal aged care policy emphasises autonomy and independence; the focus being on the need for individuals to feel in control of their lives; however, Aboriginal culture is collectivist and centres on the community rather than the individual. People living in rural and remote regions face more problems in accessing social, health and aged care services as a result of structural barriers—including basic lack of infrastructure, additional costs associated with distance from providers, higher costs faced by service providers and difficulties in attracting, training and retaining staff—than those in more populated areas (DoHA, 2002). Module 4 – GER4CSS Page 9 of 22 College of Science, Health and Engineering In 2001, veterans1 were assigned Special Needs Status under the Department of Health and Ageing’s Aged Care Act 1997. The assigning of Special Needs Status was based on: The rapid ageing of the veteran population• Their service, sacrifice and hardship• Their unique cultural identity.• Care needs of the special needs groups recognised by the Australian Government are linked to the distinct cultural and social circumstances of each group and associated incompatibilities with mainstream care. To provide quality care, aged care services need to become culturally competent and able to respond to the social, cultural, linguistic, spiritual, and gender diversity of the people for whom they are caring. For Consideration Are there any other sectors of the older population that you think should be considered special needs groups by the Australian Government? In what way(s) is this group disadvantaged in comparison with the general older population? Reading: Productivity Commission 2011, Caring for Older Australians, Inquiry Report, Canberra. http://www.pc.gov.au/inquiries/completed/aged-care/report/aged-care-volume2.pdf Chapter 13 1 Defined by the Department of Veterans’ Affairs as “…a veteran of the Australian or allied defence force; or a spouse or widow/er of a person mentioned above”. Module 4 – GER4CSS Page 10 of 22 College of Science, Health and Engineering OLDER PEOPLE FROM CULTURALLY AND LINGUISTICALLY DIVERSE BACKGROUNDS Factors that influence the health and wellbeing of older people from CALD backgrounds The physical and mental health of people from CALD backgrounds from all age groups is dependent on many inter-related factors; these include migration circumstances, resettlement issues, level of integration into the receiving country, socioeconomic circumstances (Quine, 1999; Rao, Warburton, & Bartlett, 2006). These factors as well as culture and language needs and adverse life events impact on the level of need for ethno-specific aged care and support services. Migration circumstances, relocation and integration Relocation and adaptation into the social and cultural environment of the receiving country is a lifetime process that may have a debilitating effect on the health of immigrants. Often referred to as “migrant distress” or “acculturative stress”, poorer mental health is particularly evident among overseas-born people with passive, emotion-focused coping style and low levels of perceived control (Noh & Kspar, 2003). Yet there is under-recognition of depression and other affective disorders among CALD communities, and a reluctance to utilise psycho-geriatric services (Hassett & George, 2002). For refugees, past traumatic experiences of organised violence and/or war, (and in some cases torture) means that compared with other older people in the mainstream community or other migrants, older refugees have additional needs (Refugee Health Research Centre [RHRC], 2005). Older refugees are likely to have a higher risk of poorer psychological and physical health than the general population; this is largely unrecognised by policy-makers or by service providers responsible for their treatment and care (NSW Refugee Health Service, 2003). Social isolation A review of the literature identified older people from CALD backgrounds as one of the most vulnerable groups at risk of social isolation (Findlay & Cartwright, 2003). Moreover, it is common for older people from migrant and refugee backgrounds to take on caregiving roles within the family. This can lead to social isolation of the older person and neglect of their own health and wellbeing (Rao et al., 2006). Adverse life events Heightened needs for ethno-specific support are particularly related to adverse life events— especially widowhood, serious illness and the onset of disability or dementia. Even for some who are highly proficient in English and well-integrated into the receiving country, ethno-specific support may be particularly important in certain circumstances, such as those involving language regression, mental impairment or profound disability. Wall, Santalucia and Kyriazopoulos (2005) pointed out that people living with dementia are often defined primarily by their illness; in fact it is their cultural identity that becomes increasingly important to them as they come to live more in their past. Module 4 – GER4CSS Page 11 of 22 College of Science, Health and Engineering Aged care and support services for CALD older people Current government policies and programs seek to enhance access to aged care services for CALD older people, as well as build capacity for aged care providers to deliver culturally appropriate care (DoHA, 2005). Government strategies for improving access of people from CALD backgrounds to aged care in the last 10 years have included providing residential aged care services for specific groups, promoting cultural sensitivity in mainstream services and culturally appropriate assessment and referral (AIHW, 2007). The Australian Government funds two initiatives to assist providers to deliver culturally appropriate care—Partners in Culturally Appropriate Care (PICAC) and the Community Partners Program (CPP). PICAC is funded to improve partnerships between aged care service providers, culturally and linguistically diverse communities, and the Department of Health and Ageing; and to ensure the special needs of older people from diverse cultural and linguistic backgrounds are identified and addressed. The PICAC initiative provides funding to eight organisations; one in each state and territory. The objective of the CPP, which commenced in January 2005, is to promote and facilitate access by culturally and linguistically diverse communities with aged care needs to residential aged care and aged care support services. Ethnic and multicultural organisations receiving CPP project funding work to foster greater communication between CALD communities and aged care providers, to improve CALD communities’ awareness and knowledge of aged care services. Residential aged care In Victoria, three models of providing culturally appropriate residential care co-exist—generic, ethno-specific, and partnerships. In the generic model, the needs of CALD clients are met through general programs and services for the whole community. Formal support for smaller or geographically spread populations occurs mainly within the mainstream age care setting (Andrew, 2002, cited in Rowland, 2007) with “clustering” providing a means of achieving culturally appropriate residential care. Clustering entails co-locating a small number of clients with the same ethnic background so that culturally appropriate care can be provided. Ethno-specific services cater for the distinct needs of groups in relation to language, meals, living environment, activities, and pastoral care. The third model involves partnerships and brokerage arrangements between ethno-specific/multicultural and generic service providers. Historically, one-off capital funding was made available to ethno-specific communities wishing to secure land and established ethno-specific residential aged care facilities. This type of funding is no longer generally available. Community aged care and support services Forty-six per cent of the $8.8 m provided for ethno-specific HACC organisations in 2003–04 was spent on Planned Activity Groups (PAGs). These groups, which allow older people from ethnic communities to meet in convenient venues for “culturally appropriate” meals and activities, are vital for maintaining social connectivity, enabling the sharing of personal and community histories, and providing CALD older people with information about services. The popularity of PAGs among CALD communities is testament to their importance to older people from CALD backgrounds. Module 4 – GER4CSS Page 12 of 22 College of Science, Health and Engineering Utilisation of aged care services Representing 21% of the older population, older people from CALD backgrounds make up 18% of older community care clients and around 15% of older people in permanent residential care. People from CALD backgrounds use permanent residential care at lower rates than people from other backgrounds. At 30 June 2006, CALD age-specific usage rates of permanent residential care were estimated to be 46 per 1000 persons aged 75–84 years and 184 per 1000 persons aged 85 years and over. The comparative figures for people born in Australia were 57 and 248. In contrast, usage rates for CACPs are higher among people from CALD backgrounds than among those from English-speaking countries, at 18 per 1000 persons aged 75–84 years, and 42 per 1000 persons aged 85 years and over, compared with around 13 and 35 per 1000 respectively. A similar pattern is seen with use of community care packages providing high level care: EACH and EACH Dementia packages. Overall, there is a slightly lower level of use of HACC services among CALD people than among people born in Australia (DoHA, 2007). Barriers for utilisation of aged care services Under-representation of CALD clients in HACC and residential care services is attributed to a range of factors that include: cultural preferences concerning family; English language proficiency; lack of culturally sensitive care; and lack of informal carers to facilitate formal care. Language and information Low level of English language proficiency is a fundamental barrier to many CALD older people accessing aged care, health, and support services. Estimates based on 2001 Australian Bureau of Statistics (ABS) Census data found that 30% of the CALD aged population spoke little or no English—3.5% were recent settlers, arriving between 1996 and 2001, and 26.7% were longerestablished settlers, arriving before 1996 (Rowland, 2007). Where no language barriers exist, it is easier to meet the cultural needs of CALD clients, by, for example, satisfying dietary choices and recognising religious observances. While an aversion to using external care services for the elderly is common in many migrant communities, other groups express interest in the services but lack information about how to access them. Attitudes to family care Attitudes towards filial obligations to parents vary considerably across different CALD groups (de Vaus, 1996). In many of the societies from which older migrants come to Australia, using outside help to care for one’s elderly is considered a sign of failure on the part of the family and is an important barrier in preventing the take-up of services (Quine, 1999; RHRC, 2005, p. 59; Bartlett & Phillips, 1997). Data on the utilisation of aged care services suggest that older people from CALD backgrounds are more likely to make use of home-based services than residential services. Studies have found that cultural differences in caring mean that families are often reluctant to admit an older family member to an aged care facility and would prefer to receive support to enable them to care for their relatives at home (Thomas, 2003; Fitzgerald, Mullavey-O’Byrne, & Clemson, 2001). Module 4 – GER4CSS Page 13 of 22 College of Science, Health and Engineering A 2005 study by the RHRC reported that refugee families’ beliefs in the duty of family care are often undermined by the reality of resettlement hardship. The “family trap” situation can arise when families will not consider outside assistance, even though they are struggling to cope with the demands of resettlement and the care needs of their elderly relatives. Lack of culturally appropriate aged care A further barrier to the use of aged care services for older CALD people and their families arises from the negative experiences of services and/or perceptions that services do not meet cultural or language needs. Calls for more flexibility in service delivery, for the review of assessment procedures and for staffing and promotion of aged care services to CALD communities are only a few of the recommendations made by recent reports on the topic of aged care for CALD communities (Ethnic Communities’ Council of Victoria, 2007; Cardona, Chalmers, & Neilson, 2006). Geographic dispersion Geographic dispersion is a major barrier for CALD older people accessing services. Small numbers of migrants in a particular location, such as a rural community, limit the development of ethno-specific services and reduce the availability of bilingual workers and translated service information (Rao et al., 2006; Fuller & Ballantyne, 2000). Refugee experiences Assessment procedures, such as aged care assessments, may prove problematic for some refugee communities due to past experience of assessment and interviews. Lack of trust in aged care and support services can be an enormous barrier for people who have had prior traumatic experience (RHRC, 2005; NSW Refugee Health Service, 2003). Module 4 – GER4CSS Page 14 of 22 College of Science, Health and Engineering ABORIGINAL AND TORRES STRAIT ISLANDER ELDERS Factors that influence the health and wellbeing of ATSI Elders Aboriginal elders belong to the most disadvantaged group of people in Australia. Many of them experienced traumatic events such as governmental removal of children, oppressive policies, prejudice and discrimination, inadequate diet, poor medical care, cultural dispossession and displacement from their homelands (Bin-Sallik & Ranzijn, 2001). Social and economic barriers have placed Aboriginal elders at greater risk of poor health, neglect, exclusion and marginalisation, and at greater risk of requiring aged care services. Policy and provision of services for elders need to take into account the vastly different life experiences of ATSI elders from those of non-Indigenous elders. Services need to be planned and delivered in ways that are congruent with Indigenous culture. At the same time, however, the extent of diversity within the ageing Indigenous population also needs to be appreciated. Hence, aged care policy, planning, and care development for Indigenous elders must examine variations across kinship and language groups, and differences in the needs of urban elders and those living in rural and remote areas. For Consideration How have childhood and adult experiences of Indigenous older people in Australia influenced how they interact with non-Indigenous services? Aged care and support services for ATSI Australians Aged care services may be provided through both residential and community care. In many instances, older people also make use of services that are available to the general population, and younger people make use of services commonly associated with the elderly. The latter situation occurs more frequently among ATSI people than in the general population, because a shorter life expectancy and the earlier onset of chronic disease in the Indigenous population mean a greater proportion of ATSI people become ill and need care at an earlier age. The Commonwealth recognises the differences between the two population groups in this regard. The population estimate used for aged care planning for the general population is people aged 70 years and over. The comparable population for Indigenous Australians is people aged 50 years and over. In June 2006, in addition to services provided under the Aged Care Act, the Australian Government funded a further 30 flexible aged care services to provide 600 places under the National Aboriginal and Torres Strait Islander Aged Care Strategy. These services are funded to deliver culturally appropriate aged care, close to home and country. These services are located mainly in rural and remote areas. The funding is “cashed-out” and can be used flexibly so that a mix of residential and community aged care services can be provided. Funding is based on an agreed allocation of places, and not on the occupancy of those places. This provides a constant income stream so that service providers have both stability of income from the funding and flexibility to manage the delivery of aged care services. Over the four years, a further 150 flexible places will be provided through the National Aboriginal and Torres Strait Islander Aged Care Strategy. Module 4 – GER4CSS Page 15 of 22 College of Science, Health and Engineering For Consideration In 1997, Harrison argued that “the inability of those responsible for policy development in aged care to view priorities from any other than a non-Aboriginal perspective seriously hinders the protection of the rights and cultural necessities of older Indigenous people’s lives”. Has the situation changed? Utilisation of aged care services In general, the rates of use by Indigenous Australians of community-based care are higher than those of non-Indigenous Australians (AIHW, 2007). Age-specific usage rates show that utilisation of aged care services by Indigenous Australians, at 30 June 2006, was higher than that of other Australians in all age groups (AIHW, 2008). Community Aged Care Packages (CACPs) usage rates were 85 per 1000 ATSI Australians aged 75 and over compared with 20 per 1000 other Australians in this aged group. ATSI Australians also had higher usage rates for residential aged care services than other Australians in the 50–74 years aged group (8 per 1000 compared with 4 per 1000). HACC usage rates in the Indigenous population were considered too unreliable to report, but also show higher use by Indigenous Australians than non-Indigenous Australians (AIHW, 2007). Indigenous people were also more likely than other Australians to utilise aged care services at younger ages, consistent with the poorer health status and lower life expectancy for this population. Of those admitted to permanent or respite residential care during 2005–06, almost 35% were less than 65 years of age, compared with fewer than 4% of other Australians. Of all Indigenous Australians receiving Community Aged Care Packages in 2005–06, 36% were less than 65 years of age and 20% were aged 75 years or over. The corr esponding rates for other CACP clients were 4% and 63% respectively. Barriers for utilisation of aged care services Despite the higher usage rates of some aged care services, a South Australian study by Bin-Sallik and Ranzijn (2001) found that Indigenous elders and Indigenous people working with elders reported a lack of understanding about the way the mainstream aged care system works. The study also found reluctance to deal with the mainstream aged care system and little awareness among elders of how the Aboriginal aged care system works, a lack of specific services for Aboriginal elders, and a lack of adequate training in Aboriginal aged care. Very little other research has been done on the aged care needs of Indigenous elders. Module 4 – GER4CSS Page 16 of 22 College of Science, Health and Engineering FINANCIALLY OR SOCIALLY DISADVANTAGED OLDER PEOPLE According to Morris, Judd, and Kavanagh (2005), in the last two decades older Australians who are dependent on government for their income and are living in private rented accommodation have become increasingly vulnerable to the possibility of sliding into homelessness. The death of a spouse, rent increases and eviction are common precipitators of a slide into a situation of imminent homelessness. The restructuring of the welfare state and the virtual freeze on the building of social housing means that older private renters who face eviction often have nowhere to turn. Besides not being able to rely on the market or government, many people have minimal or no family and social networks. The Australian Government pays a concessional resident supplement for those aged care residents who cannot afford to make an accommodation payment. There are also hardship provisions under the Aged Care Act for residents who experience difficulty paying aged care fees. In addition, as at 2006, there were 24 residential aged care services predominantly for homeless people funded by the Australian Government, providing up to 1192 residential aged care places. These provisions by the government do not address the aspirations of older people at risk of homelessness to remain independent with the support of home and community care services. Australian research has found that two key themes underlie the housing and support needs of older homeless people—the need for security and the desire for independent living (Australian Housing and Urban Research Institute [AHURI], 2005). Housing is recognised internationally as the essential foundation for community care (Kendig & Bridge, 2007). However, in Australia there has been a tendency for housing and aged care to develop as separate, distinct policy and service systems. Initiatives in linking these systems have tended to be ad hoc, with little systematic policy integration. The importance of an integrated policy approach has become more pressing during the past decade. Population ageing means that the number of older people requiring linked housing, support and care is steadily increasing (AHURI, 2005). OLDER PEOPLE IN REMOTE AND RURAL COMMUNITIES As a consequence of internal migration, a higher proportion of the population is elderly in rural and remote areas than in the cities and their health is generally poorer than that of older people living in metropolitan areas. Australians living outside major cities have shorter life expectancy and higher death rates and are more likely to have a disability than city dwellers. Rural and remote communities also suffer from the reduction and loss of local services and community infrastructure as a result of local and global economic forces (National Rural Health Alliance Inc., 2005). Aged care services and support for older people in rural and remote communities Since 2002, the Australian Government has provided capital grants to help rural aged care homes meet these challenges (DoHA, 2006). The government also provides viability supplements to assist aged care services in rural and remote areas with the extra cost of delivering services in Module 4 – GER4CSS Page 17 of 22 College of Science, Health and Engineering those areas, and an additional daily supplement for Multi-Purpose Services that provide flexible aged care services for older people and their carers living in rural and remote areas. Remote areas have relatively few people in mainstream residential care compared with other regions (23 residents per 1000 people aged 65 years and over compared with 56 in major cities) but more people who receive CACPs (17 per 1000 population compared with 11 in major cities) and HACC services (254 clients per 1000 population compared with 199 in major cities). WAR VETERANS The veteran population in Australia is old and ageing faster than the general population. There are approximately 300,000 veterans and war widow/ers with health cards, and an additional 150,000 receiving pensions or benefits without Department of Veterans’ Affairs (DVA) treatment entitlement. Approximately three-quarters of veterans and war widow/ers with health cards are aged 75 or older. Veterans have higher rates of health risk factors compared to their non-veteran counterparts, including lack of exercise, obesity and long-term use of cigarettes and alcohol. Veterans are more likely to experience a short- or long-term illness, develop cancer, or suffer from diseases of the digestive, nervous, circulatory, and musculoskeletal systems. Veterans are also prescribed more medications than non-veterans, even allowing for disabilities. Increased rates of mental health problems are apparent in the veteran community. Veterans have much higher rates of conditions such as post-traumatic stress disorder, even though this diagnosis might not have been made in older veterans. War-related memories may have a negative affect on those with dementia, and this issue should be considered in care planning for older veterans. The veteran population makes up around a quarter of the residents of aged care facilities. In addition to services provided under the Aged Care Act, assistance to veterans is available through Veterans’ Home Care (VHC), which is provided by the Australian Government Department of Veterans’ Affairs. The VHC program provides low-level community care services for veterans. Data on usage of the VHC program and community nursing are published in Older Australia at a Glance: 4th edition (AIHW, 2007). BUILDING CULTURALLY COMPETENT AGED CARE SERVICES For Consideration Anderson and Devitt (2004) pointed out that “The notion of ‘culture’ is (mis)understood as a meaningful attribute only of those who are different, rather than as an attribute of all”. Why do you think “culture” is rarely proposed as an essential variable in relation to AngloAustralians? A recent Australian study of the language needs of older people from CALD backgrounds living in residential care found that 19% of the residents either preferred or needed to speak one of 40 different non-English languages. While over half the facilities had at least one staff member who conversed with residents in their preferred language, residents speaking nine non-English Module 4 – GER4CSS Page 18 of 22 College of Science, Health and Engineering languages were never spoken to in their original tongue (Runci et al., 2005). These findings are supported by anecdotal evidence presented to the Ethnic Communities’ Council of Victoria (ECCV), which suggests that despite the community education programs run by PICAC and CPP, many residential aged care providers fail to engage interpreters or utilise translated materials when communicating with CALD older clients (ECCV, 2007). The Aged and Community Services Australia (ACSA) National Policy Position on CALD aged and community care stresses that: [T]he needs of CALD elderly must be incorporated into service provision as an integral aspect of care, not merely as a program “add-on” or as the responsibility of a small number of ethno-specific and multi-cultural providers. For Consideration According to Associate Professor Nicholas Procter: “If we as a society are to deliver effective health care programs to diverse communities - we must endeavour to understand how they will experience them. We must use their language, and incorporate their priorities.” http://www.abc.net.au/rn/perspective/stories/2007/1942983.htm Why is this so important? What is a culturally competent aged care service? The National Center for Cultural Competence (NCCC) at Georgetown University in the United States has developed a framework for cultural competency adapted from Cross, Bazron, Dennis, and Isaacs (1989). The framework recognises that organisations and individuals are at various levels of awareness, knowledge and skills along the cultural competence continuum. Goode et al. (1989) suggested that cultural competence is a developmental process that evolves over an extended period at the individual and the organisational level. According to the NCCC framework, cultural competency requires that organisations: Have a defined set of values and principles, and demonstrate behaviours, attitudes, policies• and structures that enable them to work effectively cross-culturally. Have the capacity to value diversity, conduct self-assessment, manage the dynamics of• difference, acquire and institutionalise cultural knowledge and adapt to diversity and the cultural contexts of the communities they serve. Incorporate the above in all aspects of policy-making, administration, practice, service• delivery and involve systematically consumers, key stakeholders and communities. “Culturally appropriate care” is the end result of a culturally competent service. It ensures that: The client’s language is used if English is not possible or desired• The client’s cultural identity is affirmed and maintained• Module 4 – GER4CSS Page 19 of 22 College of Science, Health and Engineering The client is encouraged to participate in their cultural, spiritual and community life• The health care views of clients are considered while paying regard to their safety.• The NCCC Cultural Competence Framework is shown schematically below (Ann, 2007). http://www11.georgetown.edu/research/gucchd/NCCC/foundations/frameworks.html Module 4 – GER4CSS Page 20 of 22 College of Science, Health and Engineering ASSESSMENT TASK Module 4 exercises (250 words) Exercise 4.1: CALD clients Evidence suggests there are higher rates of admission and utilisation of hospital beds by older CALD people in their last year of life (Chan et al., 2003). Is this because older CALD people experience worse health than the general population? What other explanations could there be for this finding (for example: barriers to accessing aged care services)? Readings for Exercise 4.1 Atwell, R., Correa-Velez, I., & Gifford, S. (2007). Ageing out of place: Health and well-being needs and access to home and aged care services for recently arrived older refugees in Melbourne, Australia. International Journal of Migration, Health and Social Care, 3(1), 4–14. Chan, D. K. Y., Ong, B., Zhang, K., Li, R., Liu, J. G., Iedema, R., et al. (2003). Hospitalisation, care plans and not for resuscitation orders in older people in the last year of life. Age and Ageing, 32, 445–449. Rao, D. V., Warburton, J., & Bartlett, H. (2006). Health and social needs of older Australians from culturally and linguistically diverse backgrounds: Issues and implications. Australasian Journal on Ageing, 25(4), 174–175. Exercise 4.2: Indigenous clients What are some of the strategies that Indigenous communities can employ for setting up and running aged care services in a way that is culturally appropriate for their elders? Reading for Exercise 4.2 Bin-Sallik, M. A., & Ranzijn, R. (2001). Report on a scoping study into the needs of Indigenous aged care in South Australia. College of Indigenous Education, University of South Australia for Aged Care Housing Group. Exercise 4.3: Low income or homeless older people Discuss the importance of integrating housing, support and care arrangements for older homeless people. Reading for Exercise 4.3 Australian Housing and Urban Research Institute. (2005). Housing and support options for older people who are homeless. AHURI Research & Policy Bulletin, Issue 61. Davy., Bridge, C., Judd, B.; Flatau, P., Morris, A., & Phibbs, P. (2010). Age-specific housing for low to moderate-income older people. Australian Housing and Urban Research Institute. AHURI Positioning Paper No. 134.http://www.ahuri.edu.au/publications/p70589 Module 4 – GER4CSS Page 21 of 22 College of Science, Health and Engineering REFERENCES Aged and Community Services Australia. (2006). Strength through diversity: Culturally and linguistically diverse aged and community care. National Policy Position. Ann, S. (2007). Building culturally competent aged care: The long journey. Paper presented at the 2007 Cultural Diversity in Ageing National Conference, Melbourne. Australian Housing and Urban Research Institute. (AHURI). (2005). Housing and support options for older people who are homeless. AHURI Research & Policy Bulletin, Issue 61. Australian Institute for Health and Welfare. (AIHW). (2007). Older Australians at a glance: 4th edition. Cat. No. AGE 52. Canberra: AIHW. Australian Institute for Health and Welfare. (AIHW). (2008). The health and welfare of Australia’s Aboriginal and Torres Strait Islander Peoples. Cat. No. 4704.0. Canberra: Australian Institute for Health and Welfare. Bartlett, H., & Phillips, D.R., (1997). Ageing and Aged Care in the People’s Republic of China: National and local issues and perspectives. Health and Place, 3, 149–159. Bin-Sallik, M. A., & Ranzijn, R. (2001). Report on a scoping study into the needs of Indigenous aged care in South Australia. College of Indigenous Education, University of South Australia for Aged Care Housing Group. Cardona, B., Chalmers, S., & Neilson, B. (2006). Diverse strategies for diverse carers: The cultural context of family carers in NSW. Parramatta, NSW: Centre for Cultural Research, University of Western Sydney for the Department of Ageing, Disability and Home Care. Chan, D. K. Y., Ong, B., Zhang, K., Li, R., Liu, J. G., Iedema, R., et al. (2003). Hospitalisation, care plans and not for resuscitation orders in older people in the last year of life. Age and Ageing, 32, 445–449. Cross, T., Bazron, B., Dennis, K., & Isaacs, M. (1989). Towards a culturally competent system of care: A monograph on effective services for minority children who are severely emotionally disturbed: Volume I. Washington, DC: Georgetown University Child Development Center. Davy., Bridge, C., Judd, B.; Flatau, P., Morris, A., & Phibbs, P. (2010). Age-specific housing for low to moderate-income older people. Australian Housing and Urban Research Institute. AHURI Positioning Paper No. 134 Department of Health and Ageing. (DoHA). (2002). Finding solutions: Delivering quality aged care in rural and remote Australia. Canberra: DoHA. de Vaus, D. (1996). Children’s responsibilities to older parents. Family Matters 45, 16–21. Ethnic Communities’ Council of Victoria. (2007). A proposal for an ageing and cultural diversity strategy. Fitzgerald, M.H., Mullavey-O’Byrne, C., & Clemson, L. (2001). Families and Nursing Home Placements: a cross-cultural study. Journal of Cross-Cultural Gerontology, 20, 27–32. Module 4 – GER4CSS Page 22 of 22 College of Science, Health and Engineering Fuller, J., & Ballantyne, A. (2000). Immigrants and equitable health-care delivery in rural areas. Australian Journal of Rural Health, 8(4), 189–193. Hassett, A., & George, K. (2002). Access to a community and psychiatric service by elderly from non-English-speaking backgrounds. International Journal of Geriatric Psychiatry, 17, 623–628. Kendig, H., & Bridge, C. (2007). Housing policy for a long-lived society. In A. Borowski, S. Encel, & E. Ozane (Eds.), Longevity and social change in Australia. Sydney: UNSW Press. Morris, A., Judd, B., & Kavanagh, K. (2005). Marginality amidst plenty: pathways into homelessness for older Australians. Australian Journal of Social Issues, 40(2), 241–251. NSW Refugee Health Service. (2003). Caring for older refugees in NSW: A discussion paper. NSW Health. Quine, S. (1999). Health concerns and expectations of Anglo and other ethnic older Australians: A comparative approach. Journal of Cross-Cultural Gerontology, 14, 445–449. Rao, D. V., Warburton, J., & Bartlett, H. (2006). Health and social needs of older Australians from culturally and linguistically diverse backgrounds: Issues and implications. Australasian Journal on Ageing, 25(4), 174–175. Rowland, D. (2007) Ethnicity and Ageing. In A. Borowski, S. Encel. & E. Ozanne (Eds.), Longevity and social change in Australia. Sydney: UNSW Press. Runci, S., Redman, J., & O'Connor, D. (2005). Language needs and service provision for older persons from culturally and linguistically diverse backgrounds in south-east Melbourne residential care facilities. Australasian Journal on Ageing, 23, 157–161. Thomas, T. (2003). Older migrants and their families in Australia. Family Matters, 66, 40–45. Wall, S., Santalucia, Y., & Kyriazopoulos, H. (2005, November). Living in partnership: An approach to providing services for people living with dementia from culturally and linguistically diverse backgrounds. In Exploring the meaning of ageing through research, policy and practice. Papers submitted for peer review and presented to the 38th Annual Conference of the Australian Association of Gerontology. Sydney, NSW: Australian Association of Gerontology, pp. 135–141. GER4CSS Care and Support Services for Older People Module 5: Dementia care services CONTENTS READINGS.............................................................................................................................................2 INTRODUCTION................................................................................................................................3 DEMENTIA CARE PATHWAYS ......................................................................................................6 DEMENTIA CARE IN THE COMMUNITY ..................................................................................10 DEMENTIA CARE IN RESIDENTIAL AGED CARE.................................................................15 CULTURAL DIVERSITY AND DEMENTIA ........................................................................................16 ASSESSMENT TASK ..........................................................................................................................18 REFERENCES ....................................................................................................................................19 This material has been written by staff of the Australian Institute for Primary Care and Ageing for teaching purposes Colleen Doyle, Yvonne Wells, Karen Teshuva, and Mary Caruana GER4CSS 1 Module 5 Semester 1, 2017 SCENARIO Mrs Alawa is an 89-year old female, married, of Indigenous Australian background, with six children. Her primary carer is her daughter, who doesn’t work, even though the client lives with another daughter and her partner, who both work. Mrs Alawa has Alzheimer’s disease, is blind in her left eye, has cataracts, and reduced mobility. She can be resistant to care. She does not like to be told what to do; carers are best to divert her attention and just get on with whatever they are attempting to achieve with her. Understanding her background has helped in finding ways to get around any difficulties. She has attended day respite care two days per week, received showering assistance five mornings a week and some in-home respite. The respite service reported some aggression and had ceased their services when another service provider commenced. This client now receives showering assistance seven mornings a week and transport to and from the day respite centre two days per week. Respite in-home is provided two days per week (6 hrs per day). This is to assist the co-resident carers who are working. The primary carer takes her mother to her home one day a week. Other supports used This client is attending one day at an ATSI-specific day respite service and one day at an advanced dementia day respite program located in a special care unit at a nursing home. The client’s family would find it very difficult to manage without community supports. They might be able to continue with personal care and day respite, but not for any length of time. Challenges in providing support Challenges include working through issues associated with mobility and personal care. The client has been uncooperative in the past. She is not keen on getting out of bed in the cold. Her family will assist is these instances. A registered nurse and physiotherapist sometimes visit to assess the best way to mobilise and transfer the client. For Consideration Put yourself in the place of the family in the above scenario. What questions would you want answered about how to care for your mother? GER4CSS 2 Module 5 Semester 1, 2017 OBJECTIVES Students will gain an understanding of: An overview of dementia care services• Pathways of dementia care• The range of aged care services with specific reference to dementia care services• The impact of cultural and linguistic diversity and Indigenous background on dementia• care. READINGS Alzheimer’s Australia. (2007). Quality dementia care: Practice in residential aged care facilities for all staff. Alzheimer’s Australia. (2007). Dementia: A major health problem for Indigenous people. Brodaty, H., Draper,B. M., & Low, L-F. (2003). Behavioural and psychological symptoms of dementia: A seven-tiered model of service delivery. Medical Journal of Australia, 178¸ 231– 234. Foreman, P., Gardner, I., & Davis, S. (2003). A review of CDAMS clinics. Report to the Victorian Department of Human Services. Gruneir, A., LaPane, K., Miller, S., & Mor, V. (2008). Is dementia special care really special? A new look at an old question. Journal of the American Geriatrics Society, 56(2), 199–205. Pollitt, P. (1997). The problem of dementia in Australian Aboriginal and Torres Strait Island Communities: An overview. International Journal of Geriatric Psychiatry, 12, 155–163. Runci, S., Doyle, C., & Redman, J. (1999). An empirical test of language-relevant interventions for dementia. International Psychogeriatrics, 11(3), 301–311. Victorian Department of Human Services. (2006). Dementia care in hospitals. Victorian Department of Human Services. Victorian Department of Human Services. (2006). Dementia policy framework: Pathways to the future 2006 and beyond. Dementia framework for Victoria. Victorian Department of Human Services. GER4CSS 3 Module 5 Semester 1, 2017 INTRODUCTION With the ageing of the Australian population, dementia is increasing. This is because dementia is more prevalent among older people, particularly among the old–old. In Australia, the government and the community have responded to the problem of dementia with a number of actions spanning the last 20 to 30 years. Table 4.1 summarises some key milestones in the development of dementia services in Australia. Table 4.1: Development of dementia services in Australia YEAR MILESTONE COMMENT 1981 Jan Carter’s States of confusion: Australian policies and the elderly confused First focus on care of frail elderly with impaired mental capacity. Overall, no distinction made between the needs of individuals with ‘brain failure’ and those of the frail aged in general but a few isolated attempts by service providers to do this. No consumer advocacy groups. 1982 McLeay report, ‘In a home or at home; accommodation and home care for the aged’ Needs of the ‘confused elderly’ received attention for the first time. Took the view that needs of confused elderly should be met within existing services rather than through special services. Turning point in dementia policy. 1982 First Australian Alzheimer’s Association formed in Perth Similar associations were formed shortly after in Vic., SA, NSW and Tas., with Qld coming later. Territories did not form associations until the 1990s. Concern about the quality of care for people with dementia among health professionals and service providers central in these developments. Recognition of the needs of people with dementia in Commonwealth policy closely linked to the alignment of professional and family carer interests. 1985-mid 1990s Aged Care Reform Strategy Home And Community Care (HACC) Bill 1985 Joint Commonwealth/state funded program of community services where people with dementia are identified as ‘Special Needs Group’. Program supported a variety of services for people with dementia and their carers, some provided by state/territory Alzheimer’s Associations. National Geriatric Assessment Program brought to light issue of equipping such groups to define, diagnose and assess needs of people with dementia. Implementation of HACC highlighted diversity of needs of people with dementia and problems of meeting them within services that were confined to working days and business hours. Introduction of Resident Classification Instrument. 1986 Senate Select Committee Inquiry into Private Nursing Homes Nursing Homes and Hostels Review People with dementia in residential care would benefit from special programs directed towards staff training and the environment in which care was provided. Special funding to support care of people with dementia in hostels. 1986 Commonwealth supported production of Henderson and Jorm, ‘The problem of dementia in Australia’, subsequent eds. 1990, 1993, 1998 Community Options Program (Linkages Program in Victoria) First steps in establishing a knowledge base in relation to dementia. A four-year pilot program to provide casemanaged care applied in some cases to develop approaches to meeting the needs of caring for people with dementia in the community. Subsumed into HACC in 1992. GER4CSS 4 Module 5 Semester 1, 2017 YEAR MILESTONE COMMENT 1989 National body of Alzheimer’s Association was established Aimed to provide a united voice to advocate to the Australian Government, where most of the funding for aged care originated. Funding now available from Community Organisations’ Support Program, but until 1993 the national body was weak, and state Alzheimer’s Associations mainly had contact with Commonwealth. 1992 Mid-term review of Aged Care Reform Strategy Recommended consolidation of dementia care developments into an integrated National Action Plan for Dementia Care. 1992 - 96 National Action Plan for Dementia Care (NAPDC) Five-year plan, $31 million. Recognised that a significant proportion of recipients of aged care services were affected by dementia and aimed at producing change in seven areas: 1. Diagnosis and assessment – clarifying and expanding role of ACATS in assessing needs of people with dementia. 2. Services – assisting service providers and carers to achieve a safe home environment for people with dementia and to improve the quality of the physical environment of residential and day care centres. 3. Service for carers (respite, information and services). 4. Quality of service – promotion of rights and outcome standards and training for workers in residential care. 5. Community awareness – raising the level of community awareness of dementia, its impact on families and relevant government policies and programs. 6. Research and evaluation – to support the promotion, development and dissemination of research in dementia and dementia care. 7. Policy and planning – to ensure that the Alzheimer’s Association would be able to provide an effective source of expert advice to government. 1992 Community Options Program Provided a flexible mix of community services to elderly people needing institutional care but who wish to remain in their own homes (Evaluation 1992) 1994 Budget measure – Psychogeriatric Care and Support Measure (PCSI) Supported establishing a specialist psychogeriatric care and support unit (PGU) in each state (but not territory) 1994 Research funded under PCSI Study into care needs of people with challenging behaviours in Commonwealth-funded residential facilities. ‘Caring for Someone with a Dementing Condition’ conducted by University of Adelaide and South Australian Behavioural Support Unit. ‘Challenging Behaviours in Dementia: A Shared Care Model of Management’ jointly funded by PCSI & NAPDC 1995 Review of Respite Care Programs Identifying a gap in service availability for the frail aged (and other groups) with high nursing and personal care needs and with disruptive behaviour 1996 Report of Residential Aged Care Working Group Focused on improving consumer choice in aged care with special attention to people with particular needs – including people with dementia 1997 Aged Care Reform (Aged Care Act 1997) Revised Resident Classification Scale that provided better recognition of care needs, and the associated costs, of people with dementia 1998 Staying at Home Package Funding through National Respite for Carers Program for 26 new dementia respite centres nationally GER4CSS 5 Module 5 Semester 1, 2017 YEAR MILESTONE COMMENT 1999 National Forum on Dementia To identify issues/themes as a preliminary step in developing a National Strategy for an Ageing Australia 2000 National Strategy for an Ageing Australia Framework for subsequent initiatives. Document ‘Dementia Policy Framework and Commonwealth Government Initiatives’, Department of Health and Aged Care. Funding for Early Stage Dementia Respite Project run by Alzheimer’s Association Australia. Establishment of National Behaviour Helpline provided by Alzheimer’s Association Australia (aimed particularly at supporting carers in rural and remote areas). Funding through National Respite for Carers Program for new flexible and mobile respite services for carers of people with challenging behaviour – 55% of funding directed towards needs of people in rural and remote areas – funding to Alzheimer’s Australia in WA and SA. 2004 A New Strategy for Community Care: The Way Forward, Department of Health and Ageing Response to industry and consumer concerns about the complexity of community care provisions. Proposing a national framework for service delivery to align community care programs in three tiers: 1. Information and Prevention. 2. Basic Care. 3. Packaged Care. 2005 Dementia – A National Health Priority Initiative (Dementia Initiative) A budget measure of $320.6 million to support people with dementia and their carers through the ‘Helping Australians with dementia and their carers – making dementia a National Health Priority’ initiative in the form of three measures: the first, Dementia a National Health Priority, funded additional research, improved care initiatives and early intervention programs; second, funding for Dementia specific EACH (Extended Aged Care at Home) places; and third, funding for dementia-specific training for up to 9000 aged care workers and up to 7000 carers and community workers Source: Hunter, Doyle, Dunt et al. (submitted, 2008). The dementia business. Manuscript submitted for publication. For Consideration How was dementia viewed in the past? Ask a grandparent or someone from an older generation how Alzheimer’s disease was viewed by society when they were growing up. GER4CSS 6 Module 5 Semester 1, 2017 DEMENTIA CARE PATHWAYS Overview The World Health Organization’s International Classification of Diseases – Clinical Descriptions and Diagnostic Guidelines described dementia as: …a syndrome due to disease of the brain, usually of a chronic or progressive nature in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language and judgement. Consciousness is not clouded. Impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviours, or motivation. This syndrome occurs in Alzheimer’s disease, in cerebrovascular disease, and in other conditions primarily or secondarily affecting the brain. (World Health Organization, 2003) The main forms of dementia are: Alzheimer’s disease, Vascular Dementia, Lewy Body Disease; Fronto-temporal Dementia; Creutzfeldt-Jakob Disease (CJD); and Subcortical Dementia (including Huntington’s Disease and Parkinson’s Disease). Dementia is a neuro-degenerative disease; as such, it has a substantial impact on life expectancy. Recent research indicates that the average survival time for people diagnosed with dementia is 4.5 years, with survival times influenced by age, sex and disability before onset (Xie et al., 2008). Younger people (65–69 years) have survival times of 10.7 years while the oldest people with dementia have estimated survival times of 3.8 years (Xie et al.). People with dementia are two to four times more likely to die than someone the same age without dementia (Dewey & Saz, 2001; Guehne, Angermeyer, & Riedel-Heller, 2006). Progression of dementia The progression of dementia can be conceptualised as involving stages in which people with dementia gradually lose their capacity for independent living. The progression of dementia over many years is often categorised as mild (early stage), moderate (middle stage) and severe or advanced (late stage). The early stages in the progression of dementia commence with a subtle deterioration in a person’s mental functioning, often followed by the emergence of mild difficulties in daily living. The person with dementia retains a capacity for insight—which may cause distress—and tries to minimise or compensate for their difficulties by adjusting daily activities and arrangements to mask problems. Most people with early stages of dementia continue to live active and productive lives in their own homes. The middle stage on the dementia pathway is characterised by increasing difficulty in performing activities of daily living to the extent that independent living is compromised. A person with dementia may have uncharacteristic mood swings, become disoriented when making changes and need constant supervision. Community care and support services can GER4CSS 7 Module 5 Semester 1, 2017 provide essential supports for daily living. Specific aged care health services and assessment services become essential for the care of a person with dementia. During the late stages of dementia, the person is dependent on others for activities of daily living. They may no longer recognise self or others and they may lose the capacity to speak or move. The person is often placed in a residential aged care facility for the remainder of their life. Behaviours of concern diminish as the person becomes more dependent on others and is supported by a broader range of services. Service pathways focused on behaviour changes associated with dementia In recognition of the changing support needs of people with dementia as the disease progresses, a number of service pathways have been developed. One such model is that of Brodaty, Draper, and Low (2003). Brodaty et al. proposed a model for comprehensive planning of service delivery to particularly address the behavioural and psychological symptoms of dementia (BPSD). The seven-tiered model is based on severity and prevalence of BPSD and proposed that treatment is cumulative, with clients at the bottom tier receiving the least intervention and clients at the top tier receiving the most interventions. Figure 4.1: A seven-tiered model of management of behavioural and psychological symptoms of dementia (BPSD) Source: Brodaty, Draper, and Low (2003). GER4CSS 8 Module 5 Semester 1, 2017 Victorian Government dementia care pathway A number of pathways for care have been published by state governments to indicate to health professionals and policy-makers how people living with dementia can be supported at each stage. The Victorian Government provided a summary of strategies to address need, as shown in Table 4.2. Table 4.2: The dementia care pathway as conceptualised by the Victorian Government A. Health and active living, which may assist in preventing or reducing the impact of dementia Promote positive ageing and social connectedness Early life planning Meet diverse needs of communities B. Early stages on the dementia pathway Promote positive ageing and social connectedness Life planning Education and information Service development and enhancement Support for people with dementia and their carers Respite and residential accommodation Meeting diverse needs C. Middle stages on the dementia pathway Forward planning Service development and enhancement Support for people with dementia and their carers Respite and residential accommodation Meeting diverse needs D. Late stages on the dementia pathway Transitions from living at home to residential care Service development and enhancement Support for people with dementia and their carers Respite and residential accommodation Meeting diverse needs Source: Department of Human Services Victoria, 2006. Bendigo dementia management strategy The Bendigo Health Service has a regional dementia management strategy that provides detailed guidelines for health professionals on helping people to navigate their way through the health system as dementia progresses. These types of guidelines help to provide a coordinated health system and improve the quality of care able to be provided. GER4CSS 9 Module 5 Semester 1, 2017 Source: http://www.bendigohealth.org.au/ GER4CSS 10 Module 5 Semester 1, 2017 Internet Google on ‘dementia care pathway’ and find other examples of pathways used in overseas health services. For Consideration Where would you go for advice if your relative started showing symptoms that might be early dementia? What dementia-specific services are there in your local area? DEMENTIA CARE IN THE COMMUNITY Overview It is accepted in society today that people want to stay at home for as long as possible in old age, and manage any disabilities through the use of community supports and community services until services can no longer provide enough support to enable a reasonable quality of life. A range of services are available in Australia to support people living with dementia in their own home. Such services come from the federal, state and local governments, nongovernment organisations and private providers. Apart from services for the person living with dementia, some services are also focused on the wellbeing of family carers—respite, counselling or education to protect family carers from stress and carer burden. Community services for people living with dementia People with dementia can stay longer in their own homes if they are provided with community services. Significantly, the earlier community services and support are instigated, the better the outcome for both family carer and the person with dementia (Gaugler, Kane, Kane, & Newcomer, 2005). Gaugler et al. showed that people who were provided care and support in the community early in their dementia care journey were able to delay institutionalisation for longer than people who were provided such support later. In an Australian study, LoGiudice, Waltrowicz, McKenzie, Ames, and Flicker (1995) conducted a 12-month study following people with dementia who had been referred to a Victorian Aged Care Assessment Team. Cognitive impairment was the most important determinant of entry to residential aged care within 12 months of referral, with an estimated relative risk of 9.9. International studies show that people who use services are less likely to be admitted to residential care than people who do not use services (Elkan et al., 2001). Apart from delaying permanent admission to residential care, community services improve the quality of life of the person living with dementia and their family carer (Graff et al., 2007). Support can also improve mental health of family carers, and reduce hospitalisations. GER4CSS 11 Module 5 Semester 1, 2017 Dementia: a national health priority area Dementia is a national health priority area and the Australian Government is committed to making dementia care core business across the aged care system. For more information on National Health Priority Areas go to the AIHW website. The government is dedicated to supporting the care needs of older people including those with dementia and in 2015-16 the government has budgeted $16 billion for aged care. The Commonwealth Home Support Programme (CHSP) provides basic maintenance, support and care services for older people who need assistance to keep living independently at home and in their community. More information on the CHSP can be found on the department's website. People eligible for Home Care Packages may be eligible for the Dementia and Cognition Supplement. More information on Home Care Packages can be found at the My Aged Care website. In 2015-16, $11 billion has been committed by the government for residential aged care providers to support the needs of clients, including needs associated with dementia. Care funding for residential aged care is allocated via the Aged Care Funding Instrument (ACFI). More information on ACFI can be found on the department’s website. Complementing the CHSP and Home Care Packages Programme, a range of respite options is available which includes in-home respite, centre-based day respite, overnight or weekend respite, community access respite and consumer-directed respite care. More information on these can be found on respite section of the My Aged Care website. These programs are supported by the National Framework for Action on Dementia. Source: https://agedcare.health.gov.au/older-people-their-families-and-carers/dementia Assessment services and dementia Comprehensive assessment has demonstrated benefits for older people in terms of functional status and quality of life, as shown in randomised controlled trials (Kuo, Scandrett, Dave, & Mitchell, 2004). Assessment leads to better outcomes for all people, including people with dementia. At a number of different points in the dementia care pathway assessment can improve outcomes for people with dementia—CDAMS, ACAS, PGU and DBMAS. CDAMS clinic People with concerns about forgetfulness or memory loss may be referred to a CDAMS clinic if they live in Victoria, Australia. What is CDAMS? “CDAMS is a specialist diagnostic clinic which aims to assist people with memory loss, or changes to their thinking, and those who support them. CDAMS provides: Expert clinical diagnosis• Information on appropriate treatments• Education, support and information• GER4CSS 12 Module 5 Semester 1, 2017 Direction in planning for the future• Information on dealing with day-to-day issues.• Linkages for clients or their family to other service providers or community supports.• The Cognitive, Dementia and Memory Service (CDAMS) was developed by the Victorian Government in recognition of the need to provide a specialist multidisciplinary diagnostic, referral and educational service for people experiencing memory loss, or changes to their thinking, and for those who care about them. Early diagnosis is important to determine appropriate treatment needs and to plan for the future. It provides people with a timely opportunity to learn about their condition, understand changes as they occur, and cope with day-to-day issues of cognitive impairment. Anyone experiencing changes to their memory and thinking, or those who support them, are welcome to contact CDAMS. Referrals can be made through general practitioners, community agencies or by selfreferral directly to CDAMS.” Source (retrieved February 4, 2011, from http://www.health.vic.gov.au/subacute/cdams.htm) ACAS Aged care assessment teams also provide assessment services for people who are interested in gaining access to community services subsidised by the federal government or residential care services. Team health professionals may use standardised assessment tools such as Geriatric Assessment Tool; Mini-Mental State Examination; Psychiatric Assessment Tool; Geriatric Depression Scale; Rowland Universal Dementia Assessment Scale; Alzheimer’s Disease Assessment Scale – Cognitive subscale. Psychogeriatric Care Units (PGU) In 1994–95 a four-year pilot program was established to help meet the needs of older people in residential care who displayed challenging behaviours and therefore presented management difficulties, as well as people living in the community who had not been able to access mainstream residential care because of difficulties with their behaviour management. The PGU model is similar to that of the consultation–liaison models common in many acute care settings. The primary role is the provision of support and training through access to specialists with psychiatric, psychological and geriatric experience who can offer diagnostic, assessment and behavioural and therapeutic management advice and support. Each PGU operates under the guidance, direction and/or clinical involvement of a psychiatrist with qualifications and/or experience in geriatric care. The PGU ideally comprises a balance of medical and non-medical staff with qualifications and skills relevant to dementia care, which complements the skills and roles of the Aged Care Assessment Team (ACAT). DBMAS Dementia Behaviour Management Advisory Services are now being implemented in Australia. The aims of the DBMAS are to: Improve quality of life and care for people with dementia and their carers.• Upskill, assist and support aged care staff and providers to improve care for people with• dementia and related behaviours. GER4CSS 13 Module 5 Semester 1, 2017 Ensure care services for people with dementia are responsive to their individual and diverse• needs and circumstances. The clients of DBMAS are primarily care workers, carers and services providing care to the care recipients. They include: Staff of Australian Government-funded aged care services• Other clinicians (e.g., general practitioners, staff of mental health services for older• persons) providing care to people receiving Australian Government-funded aged care services Volunteers in Australian Government-funded aged care services• Family carers.• Care Recipients are also clients of DBMAS: Care recipients of DBMAS are people with dementia, their carers and families, where the• behaviour of the person with dementia impacts on their care. The person with dementia is receiving care or seeking care through Australian• Government-funded aged care services. Special needs groups Groups with special needs often have difficulty accessing dementia care services and DBMAS take these special needs into consideration during assessment and planning for care. DBMAS maintain an awareness of the current and changing service delivery requirements of special needs groups. These special groups are: People living in rural and remote Australia• People from culturally and linguistically diverse backgrounds• Aboriginal and Torres Strait Islander people.• Core services offered by DBMAS The core services are: Undertaking assessments, short-term case management and care planning• Delivery of tailored information and education workshops• Provision of clinical support, information and advice• Provision of clinical supervision, mentoring and modelling behaviour management• techniques Development and maintenance of linkages and partnerships• Facilitating the use of brokerage funds.• Support services for families: Alzheimer’s Australia GER4CSS 14 Module 5 Semester 1, 2017 Alzheimer’s Australia is the peak body providing services for families and people living with dementia in Australia. Their services include: Information about dementia• The National Dementia Helpline 1800 100 500• Support groups for people who have been diagnosed with dementia• Private and confidential counselling• Other programs and services in the area.• Internet Learn about the Victorian Government’s response to dementia care by browsing in aged care publications: http://www.health.vic.gov.au/agedcare/publications/dementia.htm Learn more about how CDAMS clinics work by browsing in: http://www.health.vic.gov.au/subacute/cdams.htm Browse at http://alzheimers.org.au/ for an overview of the services that Alzheimer’s Australia provides. GER4CSS 15 Module 5 Semester 1, 2017 DEMENTIA CARE IN RESIDENTIAL AGED CARE Overview Dementia has the greatest impact on the provision of residential aged care, compared with its impact on other services such as hospitals, GPs and community aged care programs (Australian Institute of Health and Welfare [AIHW], 2004). Doyle, Ward and Rees (2005) estimated the number of people living with dementia in the community; broadly, of the 200,000 people with dementia in Australia in 2005, approximately 87,000 were living in residential care and 113,000 were living in the community at any one time. Those living in residential care are more dependent than those living in the community; subsequently, those whose care needs are greatest are the most expensive to maintain. Prevalence of dementia in residential care facilities The Australian Institute of Health and Welfare estimated that approximately 81% of residents in high or low level residential care had dementia (AIHW, 2004). More residents in high-level care have cognitive impairment than those in low-level care. Special care units Special care units for people with dementia became popular in the 1990s. These units were generally thought to have higher staff-to-resident ratios, staff with special training and enhanced programs. Some have considered that the extra cost involved may not be producing improved benefits for the residents. A recent study published in the Journal of the American Geriatrics Society discussed the benefits of special care units and concluded that there were few added benefits to segregating people with dementia (Gruneir, LaPane, Miller, & Mor, 2008). Quality of care for people with dementia in residential care The Accreditation Agency monitors quality of care in residential care using a set of standards common for all residents—those with dementia and those with no cognitive impairment (see www.accreditation.org.au). Alzheimer’s Australia has also produced a number of guidelines for staff of residential care facilities to help them in their care of people living with dementia. The main topics of concern to Alzheimer’s Australia in caring for people in residential care are: Communication• Spiritual and emotional wellbeing• Social interaction and lifestyle• Personal care• Health care• Physical environment• Behaviour• Abuse• Sexuality• Cultural needs• Altered mental states: delirium, depression.• GER4CSS 16 Module 5 Semester 1, 2017 For Consideration What questions would you ask the facility if you were looking for residential care for someone with dementia? CULTURAL DIVERSITY AND DEMENTIA Overview Australia is a multicultural society. Services for people with dementia can be tailored to the individual’s background and preferences with “person-centred care”. Special services are required when there are strong cultural traditions, perceptions and attitudes that will influence the outcome for the person and their carer. In this final topic, we consider dementia care for Indigenous older people and for older people with dementia from culturally and linguistically diverse (non-English speaking) backgrounds. Dementia in Aboriginal and Torres Strait Islander people Aboriginal and Torres Strait Islander (ATSI) people form 1.6% of the total Australian population, yet their health profile is among the poorest of all special needs groups. Life expectancy among Indigenous Australians is much lower than that of non-Indigenous Australians. A recent study estimated that the prevalence of dementia in older (over 45) people was 12.6% compared with 2.6% in the Australian population as a whole (Alzheimer’s Australia, 2007). Indigenous views of abnormality in old age do not necessarily fit the Western view of sickness. According to Pollitt (1997) Indigenous views of "madness’ are not categorical and depend to some extent on the context in which the behaviour is displayed. Special assessment procedures are required to fully understand the disease process in Indigenous older people. The Kimberley Indigenous Cognitive Assessment Tool has been developed specifically for assessment of cognitive disorders in Indigenous people. Dementia in people from culturally and linguistically diverse backgrounds One in eight Australians with dementia do not speak English at home (Access Economics, 2006). Alzheimer’s Australia provides carers of people from culturally and linguistically diverse backgrounds with a number of supports. The National Cross Cultural Dementia Network (NCCDN) aims to provide advice to Alzheimer’s Australia and its member organisations on dementia information provision, resource development and service delivery to ensure that their programs and services provide equitable access to people from culturally and linguistically diverse backgrounds. It is also intended to act as a forum for innovative ideas and models, and to help advance national policy. GER4CSS 17 Module 5 Semester 1, 2017 Residential care facilities offer culturally sensitive programs for people from culturally and linguistically diverse backgrounds. Runci, Doyle, and Redman (1999) described a study of managing behavioural and psychological symptoms in a resident of Italian descent. They found that if cultural preferences are taken into account, the outcome is better for the resident. For Consideration Choose a language other than English and find out what information brochures and supports are available at Alzheimer’s Australia for people who speak that language primarily. Internet What Victorian initiatives have there been to help Indigenous people and people from culturally and linguistically diverse backgrounds living with dementia? For Consideration What aspects of residential aged care might need to be adjusted to accommodate the cultural background of a person with dementia? What might you consider if Mrs Alawa in the scenario needed residential care? Reading Runci, S., Doyle, C., & Redman, J. (1999). An empirical test of language-relevant interventions for dementia. International Psychogeriatrics, 11(3), 301–311. GER4CSS 18 Module 5 Semester 1, 2017 ASSESSMENT TASK Module 5 exercises (250 words) Topic: Care and support services for older people with special needs Exercise 5.1: Assessment in dementia care Assign the assessment services as described in this module (CADMS, ACAS, PGU, and DBMAS) to the tiers of the Brodaty et al. triangle. Are there any gaps? What assessments might Mrs Alawa have had? What factors should be considered when Mrs Alawa is assessed at each level of the dementia care pathway? Reading for Exercise 5.1 Alzheimer’s Australia. (2007). Dementia: A major health problem for Indigenous people. Brodaty, H., Draper,B. M., & Low, L-F. (2003). Behavioural and psychological symptoms of dementia: A seven-tiered model of service delivery. Medical Journal of Australia, 178, 231– 234. Pollit, P. (1997). The problem of dementia in Australian Aboriginal and Torres Strait Island communities: An overview. International Journal of Geriatric Psychiatry, 12 155–163. Victorian Department of Human Services. (2006). Dementia policy framework: Pathways to the future 2006 and beyond. Dementia framework for Victoria. Department of Human Services. Exercise 5.2: Special care units for people with dementia Discuss the pros and cons of special care units for people with dementia, from the perspective of the family carer, residential care staff, and residents with no cognitive impairment. Reading for Exercise 5.2 Gruneir, A., LaPane, K., Miller, S., & Mor, V. (2008). Is dementia special care really special? A new look at an old question. Journal of the American Geriatrics Society, 56(2) 199–205. Alzheimer’s Australia. (2007). Quality dementia care: Practice in residential aged care facilities for all staff. http://www.alzheimers.org.au/common/files/NAT/20090200_Nat_QDC_QDC1PracResAged CareFacAll.pdf GER4CSS 19 Module 5 Semester 1, 2017 REFERENCES Access Economics. (2006). Dementia prevalence and incidence among Australians who do not speak English at home. Retrieved July 7, 2008, from http://www.alzheimers.org.au/common/files/NAT/20061124_Nat_AE_FullDemPrevAustDo NotSpkEngHome.pdf Alzheimer’s Australia. (2007). Quality dementia care; practice in residential aged care facilities for all staff. Retrieved July 7, 2008, from http://www.alzheimers.org.au/common/files/NAT/20090200_Nat_QDC_QDC1PracResAged CareFacAll.pdf Australian Institute of Health and Welfare. (AIHW). (2004). The impact of dementia on the health and aged care systems. AIHW Cat No. AGE 37. Canberra: AIHW. Belle, S. H., Burgio, L., Burns, R., Coon, D., Czaja, S. J., Gallagher-Thompson, D., et al. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: A randomized, controlled trial. Annals of Internal Medicine, 145, 727–738. Brodaty, H., Draper, B. M., & Low, L-F. (2003). Behavioural and psychological symptoms of dementia: A seven-tiered model of service delivery. Medical Journal of Australia, 178, 231–234. Dewey, M.E., & Saz, P. (2001) Dementia, cognitive impairment and mortality in persons aged 65 and over living in the community: A systematic review of the literature. International Journal of Geriatric Psychiatry, 16, 751–761. Doyle, C., Ward, S., & Rees, G. (2005). EACH dementia development research project: Review of best practice in dementia care. Unpublished report to Australian Government Department of Health and Ageing. Elkan, R., Kendrick, D., Dewey, M.., Hewitt, M., Robinson, J., Blair, M., et al. (2001). Effectiveness of home-based support for older people: Systematic review and meta-analysis. British Medical Journal, 323, 1–8. Gaugler, J. E., Kane, R. L., Kane, R. A., & Newcomer, R. (2005). Early community-based service utilization and its effects on institutionalization in dementia caregiving. Gerontologist, 45(2), 177–85. Graff, M. J L., Vernooij-Dassen, M. J. M., Thijssen, M., Dekker, Joost, D., Hoefnagels, W. H. L. & Olderikkert, M.G. M. (2007). Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: A randomized controlled trial. Journals of Gerontology Series A-Biological Sciences & Medical Sciences, 62(9), 1002–09. Gruneir, A., LaPane, K.,Miller, S., & Mor, V. (2008). Is dementia special care really special? A new look at an old question. Journal of the American Geriatrics Society, 56(2), 199–205. GER4CSS 20 Module 5 Semester 1, 2017 Guehne, U., Angermeyer, M.C., & Riedel-Heller, S. (2006). Is mortality increased in mildly cognitively impaired individuals? A systematic literature review. Dementia Geriatrics and Cognitive Disorders, 21, 403–410. Hunter, C., Doyle, C., Dunt, D., et al. (2008). The dementia business. Manuscript submitted for publication. Kuo, H. K., Scandrett, K. G., Dave, J., & Mitchell, S. L., (2004). The influence of outpatient comprehensive geriatric assessment on survival: A meta-analysis. Archives of Gerontology and Geriatrics, 39, 245–254. LoGiudice, D., Waltrowicz, W., McKenzie, S., Ames, D., & Flicker, L. (1995). Prevalence of dementia among patients referred to an aged care assessment team and associated stress in their carers. Australian Journal of Public Health, 19, 275–79. Pollit, P. (1997). The problem of dementia in Australian Aboriginal and Torres Strait Island communities: An overview. International Journal of Geriatric Psychiatry, 12 155–163. Runci, S., Doyle, C., & Redman, J. (1999). An empirical test of language-relevant interventions for dementia. International Psychogeriatrics, 11(3) 301–311. Siggins Miller Consultants. (2001). Evaluation of the Extended Aged Care at Home Program, Aged and Community Care Service Development and Evaluation Report No. 40. Canberra: Commonwealth Department of Health and Ageing, March. Victorian Department of Human Services. (2006). Dementia policy framework: Pathways to the future 2006 and beyond. Dementia framework for Victoria. Victorian Department of Human Services. World Health Organization. (2003). International classification of diseases 10: Clinical descriptions and diagnostic guidelines. Retrieved July 4, 2008, from www.who.int/classifications/icd/en/ Xie, J., Brayne, C., Matthews, F. E. and the MRC Cognitive Function and Ageing Study collaborators. (2008). Survival times in people with dementia: Analysis from population based cohort study with 14 year follow-up. Doi:10.1136/bmj.39433.616678.25.