The Experience of Caring for a Family Member With Alzheimer's Disease

Butcher, Howard K.; Holkup, P.A.; Buckwalter, K.C.

doi:10.1177/01939450122044943

Cited by 78 publications

(111 citation statements)

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“…Few studies of caregivers of persons with dementia have used a qualitative approach to specifically examine the meaning of QOL and factors improving or worsening QOL for AD caregivers (Butcher, Holkup, & Buckwalter, 2001;Vellone et al, 2008). The experience of QOL, in this sample, reflects both aspects already reported related to the general definition of QOL (Kaplan & Ries, 2007;Kitrungroter & Cohen, 2006) and new aspects not found in the literature.…”

Section: Discussionmentioning

confidence: 92%

The Experience of Quality of Life for Caregivers of People With Alzheimer’s Disease Living in Sardinia, Italy

et al. 2011

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Purpose:This study explored the meaning of quality of life (QOL) for Sardinian caregivers of people affected with Alzheimer's disease and factors improving and worsening their QOL. Design: The phenomenological method was used to study 41 Alzheimer's disease caregivers living on the western coast of Sardinia, Italy. Interviews were conducted and analyzed using Cohen, Kahn, and Steeves's approach. Findings: Extracted themes were the following: unity and cooperation in the family; freedom/independence; having time for themselves; serenity/tranquility; and well-being and health. Caregivers identified factors that they believed worsened or improved their QOL. Family was particularly important for these caregivers. Discussion and Practice Implications: This study reinforces previous research about cultural influence on QOL and emphasizes the importance of nurses being culturally sensitive. Since Sardinia is a rural region, these findings may be useful for nurses working with caregivers in other rural settings.

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Section: Discussionmentioning

confidence: 92%

The Experience of Quality of Life for Caregivers of People With Alzheimer’s Disease Living in Sardinia, Italy

et al. 2011

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“…[3][4][5] It is associated with significant disability for patients, considerable caregiver burden and increased use of health and social services. [6][7][8][9][10] The United Kingdom estimates forecast an increase from approximately 750,000 individuals currently affected to more than 1.7 million by 2051 as the population ages. 6 Dementia prevalence not only increases with advancing age but also with proximity to death across all older agebands.…”

Section: Introductionmentioning

confidence: 99%

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

et al. 2013

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Background: Despite fast-growing 'older old' populations, 'place of care' trajectories for very old people approaching death with or without dementia are poorly described and understood. Aim: To explore end-of-life transitions of 'older old' people across the cognitive spectrum. Design: Population-based prospective cohort (United Kingdom) followed to death. Setting/participants: Mortality records linked to 283 Cambridge City over-75s Cohort participants' cognitive assessments <1 year before dying aged ≥85 years. Results: Overall, 69% were community dwelling in the year before death; of those with severe cognitive impairment 39% were community dwelling. Only 6% subsequently changed their usual address. However, for 55% their usual address on death registration was not their place of death. Dying away from the 'usual address' was associated with cognition, overall fewer moving with increasing cognitive impairment -cognition intact 66%, mildly/moderately impaired 55% and severely impaired 42%, trend p = 0.003. This finding reflects transitions being far more common from the community than from institutions: 73% from the community and 28% from institutions did not die where last interviewed (p < 0.001). However, severely cognitively impaired people living in the community were the most likely group of all to move: 80% (68%−93%). Hospitals were the most common place of death except for the most cognitively impaired, who mostly died in care homes. Conclusion: Most very old community-dwelling individuals, especially the severely cognitively impaired, died away from home. Findings also suggest that long-term care may play a role in avoidance of end-of-life hospital admissions. These results provide important information for planning end-of-life services for older people across the cognitive spectrum, with implications for policies aimed at supporting home deaths. KeywordsCognitive impairment, dementia, aged, 80 and over, aged, frail elderly, patient transfer, residential characteristics, homes for the aged, nursing homes, delivery of health care, terminal care 221What is already known about the topic?• More people will be dying in very old age and dying with dementia or cognitive impairment.• Half the very old move in the last year of life and die away from their usual residence, but it is poorly understood how cognitive impairment affects these transitions. What this article adds?• Prospective population-based research with very old people, including cognitive assessments, reveals patterns in individual trajectories through care settings that routine data cannot explore.• Although 39% of ≥85-year-olds with severe cognitive impairment live in the community in their last year of life, only 8% die there, compared with 20% home deaths among cognitively unimpaired ≥85-year-olds.• The proportions of very old people dying in hospitals or in care homes decrease and increase, respectively, with worsening cognitive impairment. Implications for practice, theory or policy• Community end-of-life care provision needs to in...

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“…The lives of their family caregivers are also dramatically changed as caregivers become overburdened with providing for both the cognitive and physical needs of their loved one and can themselves develop depression or burnout that leads to reduced quality of care [1]. Thus, individuals with EMI and their caregivers struggle for a sense of normalcy-how things were before the onset of the disease-in their lives [3,4]. In other words, their ideal situation would be to turn back the clock and live in a time before the disease changed their lives, when their lives were "normal."…”

Section: Introductionmentioning

confidence: 99%

Lifelogging memory appliance for people with episodic memory impairment

Lee

Dey

2008

Proceedings of the 10th International Conference on Ubiquitous Computing

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Lifelogging technologies have the potential to provide memory cues for people who struggle with episodic memory impairment (EMI). These memory cues enable the recollection of significant experiences, which is important for people with EMI to regain a sense of normalcy in their lives. However, lifelogging technologies often collect an overwhelmingly large amount of data to review. The best memory cues need to be extracted and presented in a way that best supports episodic recollection. We describe the design of a new lifelogging system that captures photos, ambient audio, and location information and leverages both automated content/context analysis and the expertise of family caregivers to facilitate the extraction and annotation of a salient summary consisting of good cues from the lifelog. The system presents the selected cues for review in a way that maximizes the opportunities for the person with EMI to think deeply about these cues to trigger memory recollection on his own without burdening the caregiver. We compare our system with another review system that requires the caregiver to repeatedly guide the review process. Our self-guided system resulted in better memory retention and imposed a smaller burden on the caregiver whereas the caregiver-guided approach provided more opportunities for caregiver interaction.

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The Experience of Caring for a Family Member With Alzheimer's Disease

Cited by 78 publications

References 0 publications

The Experience of Quality of Life for Caregivers of People With Alzheimer’s Disease Living in Sardinia, Italy

The Experience of Quality of Life for Caregivers of People With Alzheimer’s Disease Living in Sardinia, Italy

Place of death and end-of-life transitions experienced by very old people with differing cognitive status: Retrospective analysis of a prospective population-based cohort aged 85 and over

Lifelogging memory appliance for people with episodic memory impairment

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