Challenges and needs in dementia care: people with dementia and family caregivers’ experiences from diagnosis to follow-up in Swedish primary care: a qualitative study
Objective Primary care plays a central role in diagnosing dementia and coordinating and providing care. This study explores how older people with dementia and their family caregivers experience the process from diagnosis to follow-up in primary care, what support is needed, what works well and what...
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| Format: | Article |
| Language: | English |
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Taylor & Francis Group
2025-07-01
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| Series: | Scandinavian Journal of Primary Health Care |
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| Online Access: | https://www.tandfonline.com/doi/10.1080/02813432.2025.2529414 |
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| author | Monica Bergqvist Pia Bastholm-Rahmner Karin Modig Katharina Schmidt-Mende |
| author_facet | Monica Bergqvist Pia Bastholm-Rahmner Karin Modig Katharina Schmidt-Mende |
| author_sort | Monica Bergqvist |
| collection | DOAJ |
| description | Objective Primary care plays a central role in diagnosing dementia and coordinating and providing care. This study explores how older people with dementia and their family caregivers experience the process from diagnosis to follow-up in primary care, what support is needed, what works well and what could be improved.Design Semi-structured interviews were conducted with four people with dementia and 11 family caregivers in Stockholm, Sweden. Data were analyzed with inductive thematic analysis.Results Four themes were identified: Seamless assessment – from primary care to memory clinic, describes the transition from primary care to memory clinics, where empathy and professionalism are crucial to prevent feelings of failure. After diagnosis – a no man’s land, highlights a communication gap between memory clinics and primary care that leaves informants feeling abandoned and causes emotional distress and isolation. Follow-up in a deficient primary care, underscores the importance of having ‘a single point of entry’ for coordinated support and a primary care provider with expertise in dementia. Embracing life with the diagnosis, emphasizes the need for guidance from a dedicated dementia team to manage progression.Conclusion People with dementia and their caregivers felt that primary care often failed to meet their needs due to limited accessibility, poor coordination, and a lack of dementia-specific expertise. Strengthening the role of general practitioners, introducing liaison nurses, and enhancing collaboration with municipal services could improve continuity, navigation, and support. These findings underscore the need for Swedish health care policy to promote sustainable, person-centered dementia care models within primary care. |
| format | Article |
| id | doaj-art-2fffff47414a4bbf80d29eaa679f88f4 |
| institution | Kabale University |
| issn | 0281-3432 1502-7724 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | Taylor & Francis Group |
| record_format | Article |
| series | Scandinavian Journal of Primary Health Care |
| spelling | doaj-art-2fffff47414a4bbf80d29eaa679f88f42025-08-20T03:50:22ZengTaylor & Francis GroupScandinavian Journal of Primary Health Care0281-34321502-77242025-07-0111410.1080/02813432.2025.2529414Challenges and needs in dementia care: people with dementia and family caregivers’ experiences from diagnosis to follow-up in Swedish primary care: a qualitative studyMonica Bergqvist0Pia Bastholm-Rahmner1Karin Modig2Katharina Schmidt-Mende3Academic Primary Health Care Centre, Region Stockholm, Stockholm, SwedenAcademic Primary Health Care Centre, Region Stockholm, Stockholm, SwedenInstitute of Environmental Medicine, Unit of Epidemiology, Karolinska Institutet, Stockholm, SwedenAcademic Primary Health Care Centre, Region Stockholm, Stockholm, SwedenObjective Primary care plays a central role in diagnosing dementia and coordinating and providing care. This study explores how older people with dementia and their family caregivers experience the process from diagnosis to follow-up in primary care, what support is needed, what works well and what could be improved.Design Semi-structured interviews were conducted with four people with dementia and 11 family caregivers in Stockholm, Sweden. Data were analyzed with inductive thematic analysis.Results Four themes were identified: Seamless assessment – from primary care to memory clinic, describes the transition from primary care to memory clinics, where empathy and professionalism are crucial to prevent feelings of failure. After diagnosis – a no man’s land, highlights a communication gap between memory clinics and primary care that leaves informants feeling abandoned and causes emotional distress and isolation. Follow-up in a deficient primary care, underscores the importance of having ‘a single point of entry’ for coordinated support and a primary care provider with expertise in dementia. Embracing life with the diagnosis, emphasizes the need for guidance from a dedicated dementia team to manage progression.Conclusion People with dementia and their caregivers felt that primary care often failed to meet their needs due to limited accessibility, poor coordination, and a lack of dementia-specific expertise. Strengthening the role of general practitioners, introducing liaison nurses, and enhancing collaboration with municipal services could improve continuity, navigation, and support. These findings underscore the need for Swedish health care policy to promote sustainable, person-centered dementia care models within primary care.https://www.tandfonline.com/doi/10.1080/02813432.2025.2529414Dementiafamily caregiversinterviewsolder peopleprimary carethematic analysis |
| spellingShingle | Monica Bergqvist Pia Bastholm-Rahmner Karin Modig Katharina Schmidt-Mende Challenges and needs in dementia care: people with dementia and family caregivers’ experiences from diagnosis to follow-up in Swedish primary care: a qualitative study Scandinavian Journal of Primary Health Care Dementia family caregivers interviews older people primary care thematic analysis |
| title | Challenges and needs in dementia care: people with dementia and family caregivers’ experiences from diagnosis to follow-up in Swedish primary care: a qualitative study |
| title_full | Challenges and needs in dementia care: people with dementia and family caregivers’ experiences from diagnosis to follow-up in Swedish primary care: a qualitative study |
| title_fullStr | Challenges and needs in dementia care: people with dementia and family caregivers’ experiences from diagnosis to follow-up in Swedish primary care: a qualitative study |
| title_full_unstemmed | Challenges and needs in dementia care: people with dementia and family caregivers’ experiences from diagnosis to follow-up in Swedish primary care: a qualitative study |
| title_short | Challenges and needs in dementia care: people with dementia and family caregivers’ experiences from diagnosis to follow-up in Swedish primary care: a qualitative study |
| title_sort | challenges and needs in dementia care people with dementia and family caregivers experiences from diagnosis to follow up in swedish primary care a qualitative study |
| topic | Dementia family caregivers interviews older people primary care thematic analysis |
| url | https://www.tandfonline.com/doi/10.1080/02813432.2025.2529414 |
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