Experiences of people with intellectual disability and dementia: A systematic review

Jacobs, Paula; Watchman, Karen; Wilkinson, Heather; Hoyle, Louise; McGenily, Laura

doi:10.1111/jar.13063

Cited by 3 publications

(2 citation statements)

References 67 publications

(250 reference statements)

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“…Several participants were also eager to emphasise how much they could still manage and how they still felt a sense of self. According to the findings of a recent systematic review, interactions with others alter people’s sense of self and may double as an empowering means of support but can also contribute to feelings of marginalisation and isolation [ 45 ].…”

Section: Discussionmentioning

confidence: 99%

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

Molvik,

Kjelvik,

Selbæk

et al. 2024

BMC Geriatr

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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.

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Section: Discussionmentioning

confidence: 99%

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

Molvik,

Kjelvik,

Selbæk

et al. 2024

BMC Geriatr

View full text Add to dashboard Cite

show abstract

“…Several participants were also eager to emphasise how much they could still manage and how they still felt a sense of self. According to the ndings of a recent systematic review, interactions with others alter people's sense of self and may double as an empowering means of support but can also contribute to feelings of marginalisation and isolation (42).…”

Section: Openness About the Diagnosismentioning

confidence: 99%

Living with cognitive impairment: The impact of being diagnosed with dementia. A qualitative study.

Molvik,

Kjelvik,

Selbaek

et al. 2023

Preprint

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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 based on a phenomenological hermeneutic approach 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.

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Experiences of people with intellectual disability and dementia: A systematic review

Jacobs

Watchman

Wilkinson

et al. 2022

Research Intellect Disabil

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Background: Dementia disproportionately affects people with intellectual disability.Most qualitative studies explore their experiences by utilising proxy-reports. A smaller number of studies illustrate the possibility of exploring perspectives directly from people with intellectual disability and dementia.Method: This systematic review synthesised findings from existing studies (n = 8) that involve people with intellectual disability and dementia as participants to understand their experiences of dementia. Searches were conducted using CINAHL, Psy-chInfo and Social Services Abstracts.Results: Findings include descriptions of changes in individual functioning, a narrowing of social worlds and of how people made sense of the changes despite often having no knowledge of their dementia diagnosis. Additionally, discussion focuses on how people's experiences are shaped by their environments. Conclusion:The review recognises the complexities of speaking to people with intellectual disability about dementia, challenges views that people with intellectual and dementia cannot be involved in research and makes recommendations to support inclusion in future studies.

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Experiences of people with intellectual disability and dementia: A systematic review

Cited by 3 publications

References 67 publications

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

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

Living with cognitive impairment: The impact of being diagnosed with dementia. A qualitative study.

Experiences of people with intellectual disability and dementia: A systematic review

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