Dataset Information

How people with dementia and carers understand and react to social functioning changes in mild dementia: a UK-based qualitative study.

ABSTRACT:

Objectives

To analyse people with dementia and their family carers' attribution of social changes in dementia and the consequences of these attributions.

Design

Qualitative study, using a semi-structured interview guide. Individual interviews continued to theoretical saturation. Two researchers independently analysed interview transcripts.

Setting and participants

People with mild dementia and family carers purposively selected from London-based memory services for diverse demographic characteristics to encompass a range of experiences.

Primary and secondary outcomes

Attribution of social changes experienced by the person with dementia and the consequences of these attributions.

Results

We interviewed nine people with dementia and nine carers, encompassing a range of age, ethnicity and educational backgrounds.Both groups reported that the person with dementia had changed socially. People with dementia tended to give one or two explanations for social change, but carers usually suggested several. People with dementia were often socially embarrassed or less interested in going out, and they or their relatives' physical illness or fear of falls led to reduced social activity. Carers often attributed not going out to a choice or premorbid personality. Carers found that their relative needed more support to go out than they could give and carers needed time to themselves because of carer stress or other problems from which they shielded the person with dementia. Additionally, there was decreased opportunity to socialise, as people were bereaved of friends and family. Participants acknowledged the direct impact of dementia symptoms on their ability to socially engage but sometimes decided to give up socialising when they knew they had dementia. There were negative consequences from social changes being attributed to factors such as choice, rather than dementia.

Conclusion

Clinicians should ask about social changes in people with dementia. Explaining that these may be due to dementia and considering strategies to overcome them may be beneficial.

SUBMITTER: Singleton D

PROVIDER: S-EPMC5541577 | biostudies-literature | 2017 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

How people with dementia and carers understand and react to social functioning changes in mild dementia: a UK-based qualitative study.

Singleton David D Mukadam Naaheed N Livingston Gill G Sommerlad Andrew A

BMJ open 20170712 7

<h4>Objectives</h4>To analyse people with dementia and their family carers' attribution of social changes in dementia and the consequences of these attributions.<h4>Design</h4>Qualitative study, using a semi-structured interview guide. Individual interviews continued to theoretical saturation. Two researchers independently analysed interview transcripts.<h4>Setting and participants</h4>People with mild dementia and family carers purposively selected from London-based memory services for diverse ...[more]

PMID: 28706105

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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.

Project description:IntroductionThis study examines the potential of dance to improve social inclusion for people living with dementia and carers. Research suggests that arts-based programmes can improve the health of people living with dementia and carers; however, little is known about how these programmes might address barriers to social inclusion. Addressing barriers requires the development and evaluation of accessible, non-stigmatising and affordable programmes that facilitate social inclusion across the continuum of institutional, community and household care settings.Methods and analysisThe study involves a qualitative sequential pilot study of the innovative Baycrest NBS Sharing Dance Seniors programme underway in non-metropolitan regions of two Canadian provinces. It focuses on the remotely instructed delivery of the programme in care facilities, community centres and households. The study involves five phases of observations, diaries, focus groups and interviews with programme participants (people living with dementia), carers, coordinators, instructors and volunteers as well as critical reflections among research investigators and knowledge users. NVivo-based thematic and narrative analyses of the qualitative data will produce new knowledge about the experiences, effectiveness and challenges of the dance programme that will inform understanding of whether and in what ways it increases social inclusion and quality of life for older people living with dementia and carers. The findings will identify opportunities for programme expansion and support the further development of arts-based approaches.Ethics and disseminationThe study is approved by the Research Ethics Boards at Trent University and Brandon University, and by participating organisations according to their governance procedures. The perspectives of people living with dementia and carers are incorporated throughout the study (from design to dissemination) and the study adheres to the ethical considerations when including people with dementia. A series of publicly available reports, seminars and symposia will be undertaken in collaboration with knowledge user and collaborating organisation partners.

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Dataset Information

How people with dementia and carers understand and react to social functioning changes in mild dementia: a UK-based qualitative study.

Objectives

Design

Setting and participants

Primary and secondary outcomes

Results

Conclusion

Publications

How people with dementia and carers understand and react to social functioning changes in mild dementia: a UK-based qualitative study.

Similar Datasets

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