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Published in: BMC Geriatrics 1/2024

Open Access 01-12-2024 | Dementia | Research

Exploring the lived experience: impact of dementia diagnosis on individuals with cognitive impairment - a qualitative study

Authors: Inger Molvik, Grete Kjelvik, Geir Selbæk, Anne Marie Mork Rokstad

Published in: BMC Geriatrics | Issue 1/2024

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Abstract

Objective

Although knowledge about the experience of being diagnosed with dementia is limited, with the expected rise in dementia’s prevalence in the coming decades, such knowledge is pivotal for the people diagnosed, their families, and healthcare planners. Thus, the aim of our study was to explore the experience of living with cognitive impairment and dementia and the impact of being diagnosed with dementia.

Method

A qualitative design was applied. Participants were recruited based on age-adjusted values below ​​threshold values on the Montreal Cognitive Assessment Scale (i.e. 70–79 years, < 22; 80–89 years, < 21; 90 + years, < 20), and the sample ultimately included 15 participants: six with and nine without a documented dementia diagnosis. Qualitative content analysis was performed on the transcribed interviews in four steps to identify codes, categories, and the overall theme.

Results

Three major categories emerged from the interviews: (1) experiences with changes, (2) experiences with being diagnosed with dementia, and (3) existential experience. All participants with and most participants without a dementia diagnosis experienced changes in cognition.

Conclusion

Our findings imply that being diagnosed with dementia is a relief because it explains observed cognitive and functional decreases and reduces confusion, shame and stigma. However, it also raises concerns about an unknown future. Most participants not diagnosed with dementia reported having little or no difficulty with everyday living and leading a fulfilling life. Those findings emphasise the significance of timely versus early diagnosis.
Footnotes
1
The Visitor Service is the Red Cross’s oldest and largest social care activity [35]. The Norwegian Red Cross. This is the Red Cross 2016 [Available from: https://​www.​rodekors.​no/​globalassets/​_​om-rode-kors/​sentrale-lover-og-planer/​this_​is_​rc_​2016_​web.​pdf. Therein, some volunteers specialise in visiting people with dementia. The Norwegian Health Association, which is also the Norwegian Alzheimer’s Association, educates volunteers called “Aktivitetsvenn’ who focus on engage in activities with people who have dementia [36]. Norwegian Health Association. Aktivitetsvenn https://​nasjonalforening​en.​no/​: Norwegian Health Association; 2023 [Available from: https://​nasjonalforening​en.​no/​tilbud/​aktivitetsvenn-for-personer-med-demens/​.
 
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Metadata
Title
Exploring the lived experience: impact of dementia diagnosis on individuals with cognitive impairment - a qualitative study
Authors
Inger Molvik
Grete Kjelvik
Geir Selbæk
Anne Marie Mork Rokstad
Publication date
01-12-2024
Publisher
BioMed Central
Keywords
Dementia
Dementia
Published in
BMC Geriatrics / Issue 1/2024
Electronic ISSN: 1471-2318
DOI
https://doi.org/10.1186/s12877-024-04665-3

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