Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers A Way Forward (2021) / Chapter Skim
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2 Moving Toward Better Dementia Care, Services, and Supports
2 Moving Toward Better Dementia Care, Services, and Supports
Pages 39-60
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From page 39... ...
The chapter ends with a set of guiding principles and core components that point to a better way to support persons living with ementia d and their care partners and caregivers so they can thrive and live well. LIVING WELL WITH DEMENTIA The Experience of Persons Living with Dementia Recent estimates place the number of people living with dementia in the United States somewhere between 3.7 and 5.8 million (Alzheimer's Asso 39
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From page 40... ...
Along with these symptoms, the abilities of the person living with dementia to live independently and carry out activities of daily living decline. As a result, he or she relies more heavily on care partners or caregivers (Gitlin and Hodgson, 2018; NRC, 2010)
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FIGURE 2-1 Timeline of typical disease progression in dementia. SOURCE: Adapted from Gitlin and Hodgson, 2018.
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. These h conditions may affect the type and amount of care, services, and supports needed, as well as complicate both dementia care and care for other conditions.
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. LTSS may be delivered by care partners and caregivers (often family members and friends)
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A central premise of this report, then, is that the disabilities experienced by a person with dementia are generally accommodated by one or more people who help compensate for the person's cognitive impairments. These people -- whether care partners, caregivers, or networks of people that change over time -- represent an essential care component for persons living with dementia, who often rely on and want their involvement.
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From page 45... ...
In the later stages of dementia, however, care partners and caregivers take on a greater role and often can provide useful contextual information, such as how often the pain occurs, under what circumstances, and with what associated symptoms. All of these roles ideally ensure that the person living with dementia lives a typical day that is safe and social and is engaged in meaningful activities.
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From page 46... ...
The risk factors associated with a higher number of unmet needs for care partners and caregivers included being a racial minority and having lower educational attainment. Neither unpaid nor paid caregivers, such as home health aides or certified nursing assistants, receive adequate training and support for this challenging work (Burgdorf et al., 2019; NASEM, 2016)
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From page 47... ...
Of late, the language has been further nuanced to truly distinguish the person from the disease and the illness experience, as exemplified by this report's use of the term "a person living with dementia." While most care continues to be delivered solely by family caregivers, there is now greater recognition of dementia care, services, and supports as a societal concern and responsibility, as described in greater detail below.
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48 FIGURE 2-2 Google n-gram, a year-to-year summary of the frequency of a word's use in books in the English language from 1900 to 2019, for key terms related to dementia and dementia care. SOURCE: Google Books Ngram Viewer.
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From page 49... ...
In 2015, for example, a person living with dementia received an average of 127 hours of assistance per month from one or more unpaid caregivers (Chi et al., 2019) , and it is estimated that this unpaid caregiving had an annual monetary value of $50–$106 billion as of 2010 (Hurd et al., 2013)
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. A strengths-based approach can empower persons living with dementia with the decision-making ability to determine the level of assistance needed while supporting the ability of care partners and caregivers to provide appropriate care (Dementia Action Alliance and The Eden Alternative, 2020)
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It argues for the responsibility of the care s ystem -- including medical care; LTSS; and other social services and supports, such as respite care, adult day activity programs, and transportation -- to provide care and support for persons living with dementia and their care partners and caregivers. One major challenge is that there is recognition of a workforce shortage for geriatric practitioners generally (IOM, 2008)
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. Con sistent with the movement toward person-centered approaches described above, the summits incorporate and highlight voices of persons living with dementia, care partners, and caregivers, as well as researchers, care organi zations, and other stakeholders.
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From page 53... ...
Furthermore, there are many activities, such as listening to music and dancing, that provide pleasure for many people living with or without dementia and likely have little potential harm apart from opportunity and financial costs. At the individual or family level, persons living with dementia and their care partners and caregivers may want to experiment with these types of activities, tailored to their own interests, to see what works for them, knowing this may change as the person's condition progresses.
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From page 54... ...
This includes planning for financial and legal matters and potential problems that can occur, such as ways to mitigate errors in financial management and prevent fraud or exploitation. Information and education: Starting at the time of diagnosis, persons living with dementia, care partners, and caregivers benefit when clinicians provide clear information about the disease and offer additional educational resources and referrals.
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Safe and responsive care requires that services and health care be provided through an interdisciplinary staff whose members communicate regularly and share information. Coordination of medical care, long-term services and supports, and c ommunity-based services and supports: Quality dementia care combines medical care with community-based services and supports to provide a continuum of services that meet the complex needs and desires of persons living with d ementia, care partners, and caregivers.
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2019. An alternative payment model to support widespread use of collaborative dementia care models.
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2018. Alzheimer's Association dementia care practice recommendations.
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2009. Mild cognitive impairment: Ten years later.
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2020. It's time to care: A detailed profile of America's direct care workforce.
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