Evidence-informed Approaches for Managing Dementia Transitions

Riding the Waves

Linda Garcia, Lynn McCleary, Neil Drummond, Linda Garcia, Lynn McCleary, Neil Drummond

• Publisher: Academic Press
• Year: 2020
• ISBN:
  9780128175675
• Topic: Medizin
• Subtopic: Geriatrie

Evidence-Informed Approaches for Managing Dementia Transitions provides evidence-informed approaches and future directions for supporting a higher quality of life for people living with dementia. Through a person-centered lens, this book equips care providers to better help people living with dementia align their expectations and hopes with the trajectories they can expect in their journey. It highlights the various transitions that those with dementia will experience and describes best practices for optimal adjustment to each. Topics covered include problem identification, driving cessation, loss of financial autonomy, acute hospital admission, moving to assisted living residences and long term care homes, and palliative and end of life care.

This is a must have reference for researchers, clinicians, and mental health professionals (psychologists, counsellors, social workers, mental health nurses) as well as policy makers and other health and social care providers working with individuals with dementia.

• Emphasizes empowerment and quality of life for all those living with dementia
• Explores strategies for managing the ups and downs of the dementia journey from diagnosis to end of life
• Recommendations are couched in evidence and extensive experience of the authors

Chapter 1

Improving the lived experience of dementia transitions

Neil Drummond ¹ , Linda Garcia ^{2 , 3} , and Lynn McCleary ^{4 1} Alberta Health Services Chair in Primary Care Research, Department of Family Medicine, University of Alberta, Canada ² LIFE Research Institute, University of Ottawa, Ottawa, ON, Canada ³ Interdisciplinary School of Health Sciences, Faculty of Health Sciences, University of Ottawa, Ottawa, ON, Canada ⁴ Department of Nursing, Brock University, St. Catharines, Ontario, Canada

Abstract

Dementia is a common, progressive, chronic condition associated with cognitive impairment, particularly in seniors. In the absence of a cure, much attention is focused on providing care for people with the disease and support for their families and friends who provide most of the care. As the condition changes, the care needs of people with dementia change too. The result is typically a long series of transitions in health status, locations, organizations, practices, and people. This chapter introduces aspects of the lived experience, management, and epidemiology of dementia and some of the significant transitions that people with the disease and their caregivers frequently encounter. It then considers some research designed to identify factors associated with good transitions in dementia care and finally to discuss the nature of “good” itself, in the context of living with dementia.

Keywords

Caregiver; Health expectation; Health transitions; Hope; Locus of control; Optimism; Quality of life; Self-efficacy; Trust

Dementia is a progressive condition characterized by loss of memory and other cognitive functions. But its most significant impact on those who live with the condition is how it progressively affects daily activities. In the later stages it may affect movement, speech, and language and other noncognitive systems. The causes of these are still unclear, but the associated changes in the brain are physiological and associated with cell damage.

“Dementia” as a term refers to a syndrome of disease with symptoms of memory, cognitive, behavioral, language, and locomotive decline and, eventually, death. Whether you are a person with dementia or are close to someone who has it, it is a human and humbling experience. Alzheimer Disease International estimates that throughout the world, a new case of dementia develops every 3 seconds, although not all will be diagnosed [1]. The incidence of dementia rises exponentially between 65 and 90 years of age. Among those older than 65 years, around 7%–8% have dementia [2–4]. Among those older than 75 years, about 30% have the condition, and among those older than 85 years, over two-thirds of them do. Around 14% of all deaths may be attributed to dementia. Five-year mortality among people with dementia is 70%, compared with 35% in those without dementia [5]. Prevalence estimates for the most common individual types of dementia as proportions of the total number of dementia cases include 60% for Alzheimer's disease, 20% for vascular dementia, 15% for dementia with Lewy bodies, and 5% for frontotemporal dementia (also known as Pick's disease) [6].

Studies into dementia risk factors have shown that people with high risk for cardiovascular disease are also at high risk of dementia, although the relationship is not well identified nor understood [7]. Modifiable cardiovascular risk factors (physical inactivity, smoking, midlife hypertension, midlife obesity, diabetes), together with depression and low educational attainment, are associated with approximately 33% of patients with Alzheimer‘s disease [8]. Hypertension, hyperlipidemia, and type II diabetes are associated with an increase in the incidence of diagnosed dementia [9,10]. It has been recommended that maintaining appropriate body weight, blood pressure, blood glucose, and cholesterol levels might be causally linked to decreasing, or delaying, the incidence of dementia [11–13]. A 10% reduction in hypertension, diabetes, smoking, and other risks might reduce the prevalence of dementia by 8.3% [14]. A 1-year delay in the mean age of dementia onset could lead to a 10% reduction in dementia prevalence by 2050 [15]. Recent research suggests that the incidence of dementia is declining, along with a declining incidence of stroke, which might further suggest an association between cardiovascular disease risk control and overall health status in the community [16,17].

The onset of dementia is insidious and its development is normally very slow. As discussed in Chapter 2, diagnosis may not occur for a substantial period, during which the individual who has the disease and their caregivers struggle to explain slowly worsening cognitive function until a point is reached at which help is sought. Even then, diagnosis may be delayed [2,18]. Average life expectancy from the point of diagnosis is estimated at 8–10 years but is subject to much variation associated with age at onset, preceding general health status, comorbidity, and other factors [19]. Most people with dementia die from other causes. Alzheimer disease was the sixth most common cause of death in Canada in 2017, at 18/100,000 people [20].

Treatment for dementia typically involves a gradual increase in support for those with the disease and their caregivers. These supports include clinical and social services, initially in the community, later including respite care, and, eventually, long-term residential care. While dementia treatment does not require acute care or hospitalization, people with dementia are often admitted to hospital for treatment of other medical conditions, as discussed in Chapter 5.

A focus in research is finding a cure, but none are yet in sight. Pharmaceutical treatment depends on the type of dementia. Treatment usually consists of cholinesterase inhibitor medication intended to arrest cognitive decline, if not to reverse it. This medication is recommended for treatment of Alzheimer disease, Alzheimer disease mixed with vascular disease, and for dementia associated with Parkinson disease [21]. Evidence for use with vascular dementia is limited. There are no approved medications for the treatment of Lewy bodies dementia or frontotemporal dementia. Data on effectiveness of cholinesterase inhibitors for Alzheimer disease [22] indicated numbers needed to treat of seven people to achieve arrested decline in 1 person, 12 for slight cognitive improvement, and 42 for major cognitive improvement. The number needed to harm (mainly through side effects) was also 7. Later trials have been more optimistic, indicating moderate improvements in cognition and activities of daily living lasting six to 12 months in mild-to-moderate cases of dementia who had been previously prescribed the medication and continued on it, compared with those whose medication was discontinued [23].

As with many chronic health conditions, those who interact with people with dementia, as well as those who care for them, are also impacted by its effects. Contributions and experiences of caregivers are crucial to good quality of life. There is evidence that caregivers may obtain emotional or psychological satisfaction from caregiving despite the significant health hazards and burdens involved [24]. In general, both caregivers and people with dementia prefer that the person lives at home for as long as possible [25]. Interest in maintaining an acceptable quality of life for as long as possible is a key feature for those living with the disease. The willingness among caregivers to undertake a major role in the provision of care is too often taken for granted by formal service providers and funders. Yet, without their contribution, the circumstances and condition of those with dementia would be very much worse. In a book intended to help people navigate their way through problems commonly encountered in relation to dementia, we are constantly aware that it is both the person with dementia and their caregiver who require that help, even if the primary audience for this book are professional providers.

Caring, caregiving, care providing, care partnering (The terminology varies across the globe and through time), is an enormous aspect of the lived experience of dementia, for both the person with the condition and those doing the caring. The term denotes the activity (and often emotional commitment) of individuals, usually spouses, adult children, other family members, friends, or neighbors who undertake work to ensure that the person with dementia is “looked after.” Caregiving is usually informal in the sense of there being no contractual obligation. It is usually unpaid. It is often “live-in.” It is a source of enormous stress, anxiety, and fatigue, but it is also associated with a sense of responsibility being fulfilled, of commitment to a longstanding relationship, a duty to a valued individual. It is something we do only partly because we have to. We also do it for love. We often do it for far longer than we probably should, and we stop doing it with a combined sense of grief as well as relief. For these reasons, this book will continually focus on the experiences of caregivers as much as on those of individu...