scholarly journals There's no apprenticeship for Alzheimer's: the caring relationship when an older person experiencing dementia falls

2011 ◽  
Vol 32 (5) ◽  
pp. 873-896 ◽  
Author(s):  
ANNE MCINTYRE ◽  
FRANCES REYNOLDS
Keyword(s):  
Older People ◽  
Interpretative Phenomenological Analysis ◽  
Care Recipient ◽  
Term Care ◽  
Everyday Activity ◽  
Carer Burden ◽  
People With Dementia ◽  
Caring Relationship ◽  
Serious Injury ◽  
The Impact

ABSTRACTOlder people experiencing dementia are twice as likely to fall with consequences of serious injury, reduction in everyday activity, admission to long-term care and mortality. Carers of people with dementia are themselves at greater risk of physical and mental ill health, which increases as the dementia progresses. Unsurprisingly, carer burden also increases when a care-recipient falls. The aim of this study was to explore the experiences of falling of community-living older people with dementia and their carers. A qualitative approach was taken using interpretative phenomenological analysis. Nine older people with predominantly Alzheimer's disease and their ten carers were recruited from a large mental health National Health Service trust and participated in one-to-one and joint in-depth interviews. Three dyads participated in repeat interviews. Three focus groups were also carried out, with nine older people experiencing memory problems and 12 carers from a local Alzheimer's Society branch. The antecedents, falls events and consequences of falls were discussed. This paper reports specifically on the impact of falls on the caring relationship. Three themes emerged: ‘learning as you go’, ‘we're always together’, ‘nobody was interested’. The findings demonstrate how falling accentuates the impact of dementia on the dyad. Spouse-carers' discussion of their own falls emphasise the need for joint assessment of health and wellbeing to reduce carer burden and preserve the couplehood of the dyad.

An analysis of carer burden among family carers of people with and without dementia in Ireland

2020 ◽  
pp. 1-12
Author(s):  
Áine Teahan ◽  
Attracta Lafferty ◽  
John Cullinan ◽  
Gerard Fealy ◽  
Eamon O’Shea
Keyword(s):  
Older People ◽  
Well Being ◽  
Self Report ◽  
Care Recipient ◽  
Family Carer ◽  
Family Carers ◽  
Dementia Diagnosis ◽  
Carer Burden ◽  
People With Dementia ◽  
Original Dataset

ABSTRACT Objective: Despite the policy relevance of carer burden, limited research focuses on family carers’ experience of carer burden among different disease groups. This study aimed to examine differences in carer burden among family carers of people with and without dementia. Design: Secondary data analysis was conducted on a national cross-sectional dataset. Multivariable ordered logistic regression was used to analyze four levels of carer burden (low, mild, moderate, high). The main independent variable was dementia diagnosis, and controls included variables relating to the care recipient, family carer, and context of care. Setting: The original survey was funded by Irish Health Service Executive and undertaken by the National Centre for the Protection of Older People in Ireland. Participants: The original dataset consisted of 2,311 family carers of older people in Ireland. Approximately, one-fifth of this sample had a diagnosis of dementia. Measurements: Carer burden was measured using the standardized 22-item Zarit Burden Interview. Care-recipient dependency was measured using the Activities for Daily Living Scale. Sociodemographic details and information about the context of caring were collected using self-report scales. Results: In our model, dementia diagnosis and dependency level were significantly associated with carer burden. Family carer and context of care variables including gender, marital status, education, residence, co-residence, and perceived support showed significant relationships with carer burden. Our results highlighted significant differences in carer burden distribution; in particular, family carers of people with dementia were less likely to report low or mild carer burden (−6.95 ppts and −3.64 ppts, respectively) and more likely to report moderate or high carer burden (8.46 ppts and 2.13 ppts, respectively). Conclusion: Our findings suggest that family carers of people with dementia may experience additional challenges associated with caring. Therefore, family carers of people with dementia may require tailored social supports to maintain good health and well-being.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

scholarly journals “We Are Doing These Things So That People Will Not Laugh at Us”: Caregivers’ Attitudes About Dementia and Caregiving in Nigeria

2021 ◽  
pp. 104973232110041
Author(s):  
Candidus C. Nwakasi ◽  
Kate de Medeiros ◽  
Foluke S. Bosun-Arije
Keyword(s):  
The United States ◽  
Structured Interviews ◽  
Dementia Caregivers ◽  
Term Care ◽  
Awareness Campaigns ◽  
Knowledge Deficit ◽  
People With Dementia ◽  
Qualitative Descriptive ◽  
The Impact

Some Nigerians, in their effort to make sense of dementia symptoms, use descriptions that may stigmatize people with dementia and their families. This qualitative descriptive study focused on the everyday understanding of dementia and the impact of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria and analyzed for themes. Afterward, results were presented to focus groups of 21 adult Nigerians residing in the United States for more contextual insight on the findings. The three major themes were misconceptions about dementia symptoms, caregiving protects against stigmatization, and stigma affects caregiving support. Overall, we argue that knowledge deficit, poor awareness, and traditional spiritual beliefs combine to drive dementia-related stigmatization in Nigeria. Strategies such as culturally appropriate dementia awareness campaigns and formal long-term care policies are urgently needed to help strengthen informal dementia caregiving in Nigeria.

scholarly journals Quality of Care Provided by Family Caregivers of Older People With Dementia: Measurement and Interpretations

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 152-152
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Primary Reason ◽  
People With Dementia ◽  
High Level ◽  
The Impact ◽  
The Relationship

Abstract Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.

Habituation Theory and Environment-Aging Research: Ennui to Joie De Vivre?

1989 ◽  
Vol 29 (4) ◽  
pp. 241-257 ◽  
Author(s):  
Carolyn Norris-Baker ◽  
Rick J. Scheidt
Keyword(s):  
Older People ◽  
Psychological Control ◽  
Long Term Care ◽  
Aging Research ◽  
Term Care ◽  
Targeted Interventions ◽  
Situational Characteristics ◽  
The Social ◽  
The Impact

Robert Kastenbaum posits that functional aging results in the overadaptation to our own routines and expectations, producing “hyperhabituation,” mental stagnation, and novaphobic response orientations. This article examines the promise and implications of this notion for two areas of environment-aging research: psychological control and environmental comprehension. Possible causal and mediating links between control and habituation are considered, as well as the impact of habituation on environmental perception, cognition, and appraisal. Personal and situational characteristics of older people likely to be at risk for habituated responses are suggested. The article also speculates about individually- and environmentally-targeted interventions which might prevent and/or ameliorate tendencies toward hyperhabituated responses among older people who reside in highly ritualized and constant environments such as long-term care institutions. Interventions subject to future evaluations include modifications for the social, physical, and policy milieux and desensitization of novaphobic responses.

scholarly journals Fourth Ageism: Real and Imaginary Old Age

Societies ◽  
2021 ◽  
Vol 11 (1) ◽  
pp. 12
Author(s):  
Paul Higgs ◽  
Chris Gilleard
Keyword(s):  
Older People ◽  
Long Term Care ◽  
Social Representations ◽  
Later Life ◽  
Chronological Age ◽  
Biological Parameters ◽  
Term Care ◽  
The Impact ◽  
State Responses

This paper is concerned with the issue of ageism and its salience in current debates about the COVID-19 pandemic. In it, we address the question of how best to interpret the impact that the pandemic has had on the older population. While many feel angry at what they see as discriminatory lock-down practices confining older people to their homes, others are equally concerned by the failure of state responses to protect and preserve the health of older people, especially those receiving long-term care. This contrast in framing ageist responses to the pandemic, we suggest, arises from differing social representations of later life, reflecting the selective foregrounding of third versus fourth age imaginaries. Recognising the tension between social and biological parameters of ageing and its social categorisations, we suggest, may offer a more measured, as well as a less discriminatory, approach to addressing the selective use of chronological age as a line of demarcation within society.

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