Dataset Information

What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study.

ABSTRACT:

Objectives

The COVID-19 pandemic has led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic, as a group who rely on timely and responsive services to live well with the condition. This study has sought to understand how COVID-19 has affected the quality of life of people diagnosed with dementia and their family carers.

Design

Our mixed-methods study was nested in a larger cohort study of an education programme, Time for Dementia.

Setting

The study took place in the South-East of England.

Participants

Existing study participants, family carers were approached about the COVID-19 nested study. A purposeful sample of participants were invited to take part in in-depth qualitative interview. The sample included family carers in a range of different caring situations.

Measurement

Interviews were undertaken remotely by telephone. Interviews sought to understand quality of life before the pandemic, impact of the restrictions on both the person with dementia and family carer, role of services and other agencies as well as supportive factors. Data were analysed using thematic analysis.

Results

16 family carers were interviewed. Seven themes were identified from our analysis: (1) decreased social interaction; (2) reduced support; (3) deteriorating cognitive and physical health for the person with dementia; (4) decreased carer well-being; (5) difficulties understanding COVID-19 restrictions; (6) limited impact for some and (7) trust and relationship with care home. There was little change between themes during the first and second wave of national lockdowns.

Conclusions

Our study provides an understanding the short-term impact of COVID-19 on the quality of life of people with dementia and their family carers. Our findings suggest that recovery between the first and second wave of the restrictions did not automatically take place.

SUBMITTER: Daley S

PROVIDER: S-EPMC8845096 | biostudies-literature | 2022 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study.

Daley Stephanie S Akarsu Nazire N Armsby Elise E Farina Nicolas N Feeney Yvonne Y Fine Bethany B Hughes Laura L Pooley Joanna J Tabet Naji N Towson Georgia G Banerjee Sube S

BMJ open 20220210 2

<h4>Objectives</h4>The COVID-19 pandemic has led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic, as a group who rely on timely and responsive services to live well with the condition. This study has sought to understand how COVID-19 has affected the quality of life of people diagnosed with dementia and their family carers.<h4>Design</h4>Our mixed-methods study was nested in a larger cohort study of an education p ...[more]

PMID: 35144951

Similar Datasets

Project description:ObjectiveTo identify common difficult decisions made by family carers on behalf of people with dementia, and facilitators of and barriers to such decisions, in order to produce information for family carers about overcoming barriers.DesignQualitative study to delineate decision areas through focus groups and complexity of decision making in individual interviews.SettingCommunity settings in London.Participants43 family carers of people with dementia in focus groups and 46 carers who had already made such decisions in individual interviews.ResultsFamily carers identified five core problematic areas of decision making: accessing dementia related health and social services; care homes; legal-financial matters; non-dementia related health care; and making plans for the person with dementia if the carer became too ill to care for them. They highlighted the difficulties in making proxy decisions, especially against active resistance, and their altered role of patient manager while still a family member. Families devised strategies to gain agreement in order to ensure that the person with dementia retained dignity.ConclusionsThe following strategies helped with implementation of decisions: introducing change slowly; organising legal changes for the carer as well as the patient; involving a professional to persuade the patient to accept services; and emphasising that services optimised, not impeded, independence. To access services, carers made patients' general practice appointments, accompanied them to the surgery, pointed out symptoms, gained permission to receive confidential information, asked for referral to specialist services, and used professionals' authority to gain patients' agreement. End of life decisions were particularly difficult. They were helped by knowledge of the person with dementia's previous views, clear prognostic information, and family support. Information sheets to help carers to overcome barriers to proxy decision making have been developed; their impact in practice has yet to be evaluated.

Dataset Information

What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study.

Objectives

Design

Setting

Participants

Measurement

Results

Conclusions

Publications

What factors have influenced quality of life in people with dementia and their family carers during the COVID-19 pandemic: a qualitative study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets