Abstract
Introduction: It is complex to differentiate dementia in people with severe/profound intellectual (and multiple) disabilities – SPI(M)D – from the low level of cognitive functioning at baseline. Little is known about observable dementia symptoms in this population.
Aim: This study examined 1) observable dementia symptoms, 2) relevance of a diagnosis of dementia and 3) training/information needs of care professionals and family members.
Methods: To collect dementia symptoms in people with SPI(M)D, we conducted a systematic literature review and held four focus groups with care professionals and family members experienced with people with SPI(M)D (≥40 years) and decline/ dementia. Relevance of a diagnosis and training needs were also discussed in these focus groups.
Results: Dementia symptoms described in the very scarce literature and mentioned in the focus groups were categorized in a symptom matrix. Cognitive and behavioral changes were reported most prominently (research question 1). Focus group results indicated that participants want to know a dementia diagnosis for a better understanding and to be able to make informed choices (research question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organizational choices/policies (research question 3).
Conclusion: Timely identifying/diagnosing dementia allows for a timely response to changing needs of a person with SPI(M)D. This requires a better understanding of symptoms. Since the scare literature is insufficient and inconclusive, our practice-based focus group inventory of observable symptoms provides direction for future studies.
Aim: This study examined 1) observable dementia symptoms, 2) relevance of a diagnosis of dementia and 3) training/information needs of care professionals and family members.
Methods: To collect dementia symptoms in people with SPI(M)D, we conducted a systematic literature review and held four focus groups with care professionals and family members experienced with people with SPI(M)D (≥40 years) and decline/ dementia. Relevance of a diagnosis and training needs were also discussed in these focus groups.
Results: Dementia symptoms described in the very scarce literature and mentioned in the focus groups were categorized in a symptom matrix. Cognitive and behavioral changes were reported most prominently (research question 1). Focus group results indicated that participants want to know a dementia diagnosis for a better understanding and to be able to make informed choices (research question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organizational choices/policies (research question 3).
Conclusion: Timely identifying/diagnosing dementia allows for a timely response to changing needs of a person with SPI(M)D. This requires a better understanding of symptoms. Since the scare literature is insufficient and inconclusive, our practice-based focus group inventory of observable symptoms provides direction for future studies.
| Translated title of the contribution | Dementia in people with severe/profound intellectual (and multiple) disabilities: research into observable symptoms, relevance and training needs |
|---|---|
| Original language | Dutch |
| Pages (from-to) | 139-159 |
| Number of pages | 21 |
| Journal | Nederlands Tijdschrift voor de Zorg aan mensen met verstandelijke beperkingen (NTZ) |
| Volume | 47 |
| Issue number | 4 |
| Publication status | Published - 21-Dec-2021 |