Long-term consequences of the Alzheimer's caregiver role: A qualitative analysis

Karlin, Nancy J.; Bell, Paul A.; Noah, Jody L.

doi:10.1177/153331750101600306

Cited by 24 publications

(23 citation statements)

References 19 publications

(18 reference statements)

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“…Multiple studies exploring the perspectives of family caregivers of patients with AD have identified role changes, caregiver burden, communication, support and resources, loss and grief, and guilt about nursing home placement to be the major issues 19–25. A recent study suggests that QOL in AD partners is lower than healthy elderly individuals and AD patients 25.…”

Section: Discussionmentioning

confidence: 99%

Descriptive study of partners’ experiences of living with severe heart failure

et al. 2011

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PURPOSE-The purpose of this qualitative study was to describe the experiences of living with severe heart failure (HF) from the perspective of the partner.METHODS-In-depth, semi-structured interviews were conducted with 14 partners of individual's diagnosed with severe HF. Content analysis was performed to derive the main themes and sub-themes. CONCLUSION-The severity of the patient's disease limited the partner's lifestyle, resulting in social isolation and difficulties in planning for the future for both the patient and the partner. The partner's were unprepared to manage the disease burden at home without consistent information and assistance by healthcare providers. Additionally, end of life planning was neither encouraged by the healthcare provider nor embraced by the patient or partner. RESULTS-ThreeHeart failure (HF) is a debilitating chronic illness characterized by frequent exacerbations in symptoms that result in hospitalizations, high mortality rates, and impaired quality of life (QOL). 1 In 2005, 5.3 million Americans had HF, and approximately 550,000 new cases are diagnosed each year. 1 HF is the only major cardiovascular disease where incidence and prevalence continues to increase each year in the U.S. 1 The treatment of HF requires complex medication and dietary regimens to manage the disabling symptoms: fatigue, shortness of breath, weight gain, depression, and pain. 2

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Section: Discussionmentioning

confidence: 99%

Descriptive study of partners’ experiences of living with severe heart failure

et al. 2011

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“…The progressive nature of the disease will naturally mean that the person with dementia will be dependent on a carer for assistance in daily living. The burden of care, particularly during early stages of the disease, is often assumed by the spouse or a close family member [3,4]. …”

Section: Introductionmentioning

confidence: 99%

Usability of Tablet Computers by People with Early-Stage Dementia

et al. 2012

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Background: Tablet computers are generally associated with an intuitive interface. The adoption and use of tablet computers within the early-stage dementia context could potentially assist in daily living and provide users with a source for leisure activities and social networking. As dementia mainly affects the older adult population, it is expected that many people with dementia and even their carers do not use tablet computers as part of their everyday living. Objective: This paper explores the usability of tablet computers within the early-stage dementia context as a source of leisure for people with dementia. The main advantage of the use of tablet computers in this manner is to provide carers some reprieve from the constant care and attention often required in caring for people with dementia. Methods: Seven-day in-home trials were conducted to determine whether people with early-stage dementia were -capable of using a tablet computer independently. Twenty-one people with early-stage dementia and carer dyads participated in the trial. Feedback was gathered through questionnaires from both the person with dementia and their carer regarding the use of a tablet computer as part of their everyday living. Results: Approximately half the participants with dementia were able to engage with and use the tablet computer independently, which proved to be helpful to their carers. No significant traits were observed to help identify those who were less likely to use a tablet computer. Carer relief was quantified by the amount of time participants with dementia spent using the device without supervision. Conclusions: The results and feedback from the trial provide significant insights to introducing new technology within the early-stage dementia context. Users' needs must be considered on a case-by-case basis to successfully facilitate the uptake of tablet computers in the dementia context. The trial has provided sufficient justification to further explore more uses of tablet computers in the dementia context, and not just for early-stage dementia.

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“…Participants in the current study were fairly inexperienced in their role as caregivers, and few mentioned receiving help from family members or friends. However, the feeling of not being prepared was evident, and as has been stressed, 16 it is important for caregivers to experience being helped along the way by the health care system, and many participants in the current study also wished for this kind of help. Everyday food management and food work have traditionally been the responsibility of women.…”

Section: Discussionmentioning

confidence: 88%

To Be a Good Food Provider: An Exploratory Study Among Spouses of Persons With Alzheimer’s Disease

Fjellström

Starkenberg

Wesslén³

et al. 2010

Am J Alzheimers Dis Other Demen

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Large proportions of people with dementia live at home and need help from a relative. The aim of the current study was to examine how people living with persons with Alzheimer's disease (AD) perceived everyday life aspects of food choices, cooking, and food-related work. The analyses are based on focus group interviews including women and men acting as caregivers to people with AD and living in Sweden. The main results identified from the data, were how cohabitants to persons with AD struggle with either taking on a new role as a food provider or extending it, but also how they tried to cope as carer, which entailed food being an important part of the treatment of the disease. Those expressing greatest concern were those perceiving themselves as inexperienced food providers and carers, which in this study were all men.

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Long-term consequences of the Alzheimer's caregiver role: A qualitative analysis

Cited by 24 publications

References 19 publications

Descriptive study of partners’ experiences of living with severe heart failure

Descriptive study of partners’ experiences of living with severe heart failure

Usability of Tablet Computers by People with Early-Stage Dementia

To Be a Good Food Provider: An Exploratory Study Among Spouses of Persons With Alzheimer’s Disease

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