Dementia

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Barriers to accessing caregiver services The barriers to accessing caregiver support services are the same as those identified for accessing dementia-appropriate health and social services in general. These barriers include negative attitudes to diagnosis and treatment, lack of appropriately trained health workforce and of the infrastructure to scale up services, low helpseeking because dementia is considered part of normal ageing or because of stigma, lack of public policy initiatives, and lack of funds for dementia services, research, and training. Caregivers also face additional barriers when seeking services for themselves. In many LMIC, no support services are routinely available for family caregivers. Even in high-income countries there are barriers to access and uptake, including lack of recognition of the caregiving role, poor understanding of dementia and cultural influences on caregiving. Role recognition Family members often do not consider themselves caregivers, so they do not look for services that can support them in that role. Those who seek such services often find them to be scattered, uncoordinated and not appropriate to their needs (342). Health insurance policies often do not provide coverage for caregiver support services. Along with fragmented care systems, lack of knowledge about resources, and the emotional burdens of care provision, caregivers for people with dementia encounter the stigmatization of the disease. Caregivers and policy-makers alike need to recognize the importance and dignity of the caregiver role. Lack of knowledge Poor literacy, including dementia literacy, also contributes to lack of access to services (343–346). The range of skills required for adequate health literacy (e.g. understanding medical terminology and information clearly enough to be able to follow directions, recognize and respond appropriately to symptoms) are developed over a lifetime. When caregivers’ health literacy is low, their attitudes and behaviour are affected. Cultural approaches to caregiving In most Asian cultures that have been studied (such as Chinese, Korean and Malaysian), it is common for families to take full responsibility for older adults with dementia. This may be coupled with a reluctancy to discuss dementia and related caregiving issues with people outside the immediate family due to fears of “losing face”. This often results in refusal of outside help even when it is likely to be much needed (345–347). This approach to coping results in less social and emotional support for caregivers. It part of a vicious circle whereby being unable to acknowledge the disease for what it is leads to an inability to access services. Strengthening caregiving Given the important role of caregivers, both in maintaining the quality of life of the care recipient and in providing the most costeffective model of long-term care, appropriate and accessible support structures are vital. A three-fold approach to strengthen caregiving includes: • Information, resources and training: Information needs include understanding the characteristics and course of the disease and what resources are available to families, along with training in how to care for people with the disease and how to prevent and deal with behavioural symptoms. • Support and respite: There are a number of strategies for supporting caregivers, including counselling and long-term support, dyadic interventions, caregiver retreats, respite care (described in chapter 4), and family meetings that include the person with dementia. It is urgent to implement strategies that are successful and replicable, focusing on both best practices and promising ones. • Financial support: Caregivers need financial assistance in order to do their jobs well and to sustain them for the long term. A few models are in place worldwide such as the long-term care insurance in Japan (Box 3.6). In addition to caregiver benefits, disability benefits for the person with dementia and social pensions also have a part to play, as described in chapter 3. None of the steps, however, is simple. Cultural factors, linguistic issues and health literacy concerns must be considered when educating family and friends about dementia and care options. These issues are more commonly found in LMIC, although ethnic and racial minorities in high-income countries face similar challenges (348). The predicted future shortage of human resource capacity must also be addressed, alongside an expansion of services that are known to be effective and culturally appropriate and that are likely to be accessed. Given the insufficient number of specialists in LMIC, dementia care will require the engagement of community health workers, primary care doctors and nurses and family caregivers all working as a team. This will necessitate a pathway to care and support that improves access and communication and that is flexible and adaptable to the changing needs of people with dementia and their caregivers (158). The Republic of Mauritius, as one example, has recently launched a caregiver’s strategy to support both formal and informal caregivers (Box 5.3). 79
<strong>Dementia</strong>: A public health priority > CHAPTER 5 > <strong>Dementia</strong> Caregiving and Caregivers SUMMARY points • Most care for people with dementia is provided by informal, unpaid caregivers who include spouses, adult children, daughters- and sons-in-law and friends. Women are far more likely to be the caregivers in all countries. However, changing population demographics may reduce the availability of informal caregivers. • The provision of care to a person with dementia can result in significant strain for those who provide most of that care. The stressors include physical, emotional and economic pressures. Support is needed to enable informal caregivers to continue in their role for as long as possible. Support includes information to aid understanding, skills to assist in caring, respite to enable engagement in other activities, and financial support. • A range of programmes and services have been developed in high-income countries to assist family caregivers and to reduce strain. However, research on their effectiveness in different social, cultural and geographical contexts is limited. There is an urgent need to develop and implement an array of low-cost or no-cost government-supported services within an accessible infrastructure, so that even those with significant barriers to accessing services will be able to do so if motivated. • Information and education campaigns for the public – including people with dementia, their caregivers and families – aimed at raising awareness, improving understanding and decreasing stigmatizing attitudes should help overcome barriers to accessing and using services. 80
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Dementia A public health priority
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WHO Library Cataloguing-in-Publicat
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FOREWORD dementia is likely to rise
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Abbreviations A & TSI ADI ADL AIDS
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EXECUTIVE SUMMARY
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Country preparedness for dementia T
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CHAPTER 1 INTRODUCTION
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Box 1.1 What is dementia? Dementia
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In the majority of LMIC, and in som
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CHAPTER 2 EPIDEMIOLOGY OF DEMENTIA
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The quality of included studies The
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GBD region Sources of prevalence da
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Standardized prevalence (%) 9% 8% 7
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HIC LAMIC High-income Low- and midd
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Alzheimer’s disease Vascular deme
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GBD region Age group (years) Total
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Economic impact: the global societa
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GBD region Per capita costs (US$) N
Page 38 and 39: Etiology and potential for preventi
Page 40 and 41: The evidence base for the incidence
Page 42 and 43: CHAPTER 3 Dementia policy and plans
Page 44 and 45: Country Policy / plan / strategy ti
Page 46 and 47: Box 3.1 The Alzheimer’s Disease I
Page 48 and 49: Identifying priority areas for acti
Page 50 and 51: Social and legal protection, human
Page 52 and 53: Population-based catchment area Num
Page 54 and 55: attitudes reflect the ethical chall
Page 56 and 57: Early diagnosis also has a potentia
Page 58 and 59: CHAPTER 4 DEMENTIA HEALTH AND SOCIA
Page 60 and 61: The roles of different cadres of he
Page 62 and 63: Pre-diagnosis Diagnosis Post-diagno
Page 64 and 65: BOX 4.3 Day-care centres for people
Page 66 and 67: BOX 4.5 Care for people with dement
Page 68 and 69: BOX 4.7 The dementia care network i
Page 70 and 71: BOX 4.8 A multidisciplinary approac
Page 72 and 73: Clinical guidance Depending on the
Page 74 and 75: The changing demographic of care wo
Page 76 and 77: CHAPTER 5 Dementia Caregiving and C
Page 78 and 79: International organizations Neighbo
Page 80 and 81: LMIC country sites one third to two
Page 82 and 83: Caregiver strain Caregivers experie
Page 84 and 85: GBD region (green = imputed) Basic
Page 86 and 87: There are also forthcoming examples
Page 90 and 91: CHAPTER 6 PUBLIC UNDERSTANDING OF D
Page 92 and 93: The impact of stigma Low levels of
Page 94 and 95: Theme 2: Reducing the stigma of dem
Page 96 and 97: Raising awareness in the political
Page 98 and 99: CHAPTER 7 THE WAY FORWARD
Page 100 and 101: The value of action At the launch o
Page 102 and 103: For resource-poor settings, such as
Page 104 and 105: References 1. Presidential Proclama
Page 106 and 107: 104. Angevaren M et al. Physical ac
Page 108 and 109: 203. Alzheimer’s Australia. Demen
Page 110 and 111: 298. Glaser R, Kiecolt-Glaser JK. C
Page 112: I personally understand the impact
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Dementia

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