What next? Experiences of social support and signposting after a diagnosis of dementia

Hagan, Robert J.

doi:10.1111/hsc.12949

Cited by 10 publications

(10 citation statements)

References 55 publications

(100 reference statements)

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“…People with dementia notice changes in their experiences of self over time. The phrase “used to” features a lot in the data as participants describe how their character has altered over time due to the dementia by losing track of time [46] or forgetting what to do [82]. For example, in one study, a woman says, “I used to be a hard-working person, but it’s all changed.…”

Section: Resultsmentioning

confidence: 99%

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis

Eriksen

Bartlett

Grov

et al. 2020

Dement Geriatr Cogn Disord

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Introduction: For people with dementia, lived time is important to understand, as the condition affects memory, perceptions of time, and life expectancy. The aim of this study was to locate, interpret, and synthesize the experience of lived time for people with dementia. Method: This article presents a qualitative systematic meta-synthesis. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Programme criteria for qualitative studies were used to appraise the studies. Sixty-one qualitative research studies based on interviews with people with dementia were included in the review. The analysis followed the principles of interpretive synthesis. Results: Four categories were revealed: (1) rooted in the past – “I am the same as before”; (2) focussing on the present – “Nobody has tomorrow”; (3) thinking about the future – “What is going to happen to me?”; and (4) changes in the experience of self over time – “I used to….” The latent overall meaning was expressed as “being engaged with the dimensions of time.” Discussion/Conclusion: The experience of lived time is an active and important one, enabling people to manage the dementia journey. Future work involving people with dementia should foreground the experience of lived time.

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Section: Resultsmentioning

confidence: 99%

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis

Eriksen

Bartlett

Grov

et al. 2020

Dement Geriatr Cogn Disord

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“…None of our sites had a mechanism to link with people through memory clinics or their GPs. People report that there is little social support or signposting following a diagnosis of dementia ( Hagan, 2020 ). Sustaining and embedding involvement required both resources and strategies to thread these activities through planning, delivery and evaluation.…”

Section: Discussionmentioning

confidence: 99%

“…None of the DFCs had an explicit rights-based agenda in how they described their organisation and worked. We suggest that without a rights-based agenda (or at least a raised dementia awareness and the development of a vocabulary to name and voice an experience), it was harder for individuals living with dementia to organise around a collective view, or narrative, of what they had the right to expect post diagnosis ( Hagan, 2020 ).…”

Section: Intention To Involvementioning

confidence: 99%

Dementia-friendly communities: The involvement of people living with dementia

et al. 2022

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Background Dementia Friendly Communities (DFCs) offer an approach to community engagement to improve the lives of people living with dementia and their family supporters. The involvement of those living with dementia is key to creating successful DFCs. This paper examines how people affected by dementia were involved in developing and designing DFCs in England, and the impact of their involvement. Methods This study used a mixed method case study design in six DFCs in England. Data collection involved documentary analysis, a survey, and interviews and focus groups with service providers and people living with dementia and their supporters. Findings All six DFCs aspired to involve people living with dementia and their family supporters, but often relied on a small number of people living with dementia. The range of involvement activities in DFCs included Steering Group meetings, wider public consultations, and enabling feedback through data collection methods such as surveys and ‘ad hoc’ conversations. Organisations within the DFCs with experience of public consultation offered structured opportunities for involvement. There was no evidence of people living with dementia initiating or co-leading the organisation, its direction and/or the activities of the DFCs. Conclusion The involvement of people living with dementia in DFCs went beyond rhetoric, with some evidence of context sensitive and meaningful participation. Approaches towards involvement should focus on involvement in strategic planning, and on harnessing expertise in delivering different involvement activities to optimise participation of a greater breadth of people living with dementia. Engagement with local organisations who work with, and for, people living with dementia, and dedicating the resources needed for involvement work, are crucial for creating DFCs. The success of DFCs are determined by how the needs of people living with dementia are identified, discussed and reviewed by those within the community who are most affected.

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“…Pharmacological treatments are considered at their most effective during early stages. 147 An early diagnosis is not necessarily timely, as some patients feel unprepared for the diagnostic burden when memory problems first arise. 13 Timeliness relates to when the enquirer wants to seek help.…”

Section: Timely Diagnosismentioning

confidence: 99%

Assessment and management pathways of older adults with mild cognitive impairment: descriptive review and critical interpretive synthesis

Chambers

Cantrell

Sworn

2022

Health Soc Care Deliv Res

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Background Mild cognitive impairment in older adults is a risk factor for dementia. Mild cognitive impairment is a result of a diverse range of underlying causes and may progress to dementia, remain stable or improve over time. Objectives We aimed to assess the evidence base around the assessment and management pathway of older adults with mild cognitive impairment in community/primary care, hospital and residential settings. Data sources In January 2021, we searched MEDLINE, EMBASE, PsycInfo®, Scopus, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library (i.e. Cochrane Database of Systematic Reviews and Cochrane Central Register of Controlled Trials), Science Citation Index and Social Science Citation Index. The search was limited to studies published in English between 2010 and 2020. Grey literature and citation searches were also performed. Methods We performed two separate evidence reviews: (1) a descriptive review with narrative synthesis focusing on diagnosis, service provision and patient experience; and (2) a critical interpretive synthesis of evidence on the advantages and disadvantages of ‘mild cognitive impairment’ as a diagnostic label. Results A total of 122 studies were included in the descriptive review, of which 29 were also included in the critical interpretive synthesis. Study participants were most commonly recruited from populations of community-living older adults or those who had sought medical help from their general practitioner for memory problems. Follow-up searching identified a further 11 studies for the critical interpretive synthesis. The descriptive review identified multiple barriers to efficient diagnosis, starting with patient reluctance to seek help. General practitioners have a variety of cognitive tests available, but substantial numbers of patients meeting criteria for dementia do not have a diagnosis recorded. Patients may be referred to a memory clinic, but these clinics are mainly intended to identify and support people with dementia, and people with mild cognitive impairment may be discharged back to their general practitioner until symptoms worsen. Availability of scanning and biomarker tests is patchy. Qualitative studies show that patients with mild cognitive impairment and their carers find the process of investigation and diagnosis difficult and frustrating to negotiate. The key finding from the critical interpretive synthesis was that the need for a ‘timely’ diagnosis outweighs the ongoing debate about the value, or otherwise, of early investigation and labelling of memory problems. Determining what is a timely diagnosis involves balancing the perspectives of the patient, the health system and the clinician. Conclusions The two reviews reported here have applied different ‘lenses’ to the same body of evidence. Taken together, the reviews highlight the importance of a timely diagnosis for memory problems and identify barriers to obtaining such a diagnosis, from reluctance to seek help through to patchy availability of advanced diagnostic tests. Limitations The review was primarily descriptive, reflecting the prespecified review questions. Study selection was complicated by lack of a consistent definition of mild cognitive impairment and its overlap with other memory disorders. It was not possible to employ double study selection, data extraction or quality assessment, although processes of checking and verification were used throughout the review. Future work Priorities include evaluating remote methods of memory assessment and preparing for the likely future availability of disease-modifying treatments for early dementia. Research is needed on the investigation of memory problems in hospital and social care settings. Study registration This study is registered as PROSPERO CRD42021232535. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 10. See the NIHR Journals Library website for further project information.

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What next? Experiences of social support and signposting after a diagnosis of dementia

Cited by 10 publications

References 55 publications

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis

Dementia-friendly communities: The involvement of people living with dementia

Assessment and management pathways of older adults with mild cognitive impairment: descriptive review and critical interpretive synthesis

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