Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)
Background: Among people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population. Obje...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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National Institute for Health Research
2016-02-01
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| Series: | Health Services and Delivery Research |
| Subjects: | |
| Online Access: | https://doi.org/10.3310/hsdr04080 |
| _version_ | 1818142118426705920 |
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| author | Frances Bunn Anne-Marie Burn Claire Goodman Louise Robinson Greta Rait Sam Norton Holly Bennett Marie Poole Johan Schoeman Carol Brayne |
| author_facet | Frances Bunn Anne-Marie Burn Claire Goodman Louise Robinson Greta Rait Sam Norton Holly Bennett Marie Poole Johan Schoeman Carol Brayne |
| author_sort | Frances Bunn |
| collection | DOAJ |
| description | Background: Among people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population. Objectives: To explore the impact of dementia on access to non-dementia services and identify ways of improving the integration of services for this population. Design: We undertook a scoping review, cross-sectional analysis of a population cohort database, interviews with PLWD and comorbidity and their family carers and focus groups or interviews with health-care professionals (HCPs). We focused specifically on three conditions: diabetes, stroke and vision impairment (VI). The analysis was informed by theories of continuity of care and access to care. Participants: The study included 28 community-dwelling PLWD with one of our target comorbidities, 33 family carers and 56 HCPs specialising in diabetes, stroke, VI or primary care. Results: The scoping review (n = 76 studies or reports) found a lack of continuity in health-care systems for PLWD and comorbidity, with little integration or communication between different teams and specialities. PLWD had poorer access to services than those without dementia. Analysis of a population cohort database found that 17% of PLWD had diabetes, 18% had had a stroke and 17% had some form of VI. There has been an increase in the use of unpaid care for PLWD and comorbidity over the last decade. Our qualitative data supported the findings of the scoping review: communication was often poor, with an absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions. Although HCPs acknowledged the vital role that family carers play in managing health-care conditions of PLWD and facilitating continuity and access to care, this recognition did not translate into their routine involvement in appointments or decision-making about their family member. Although we found examples of good practice, these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. Pathways and guidelines for our three target conditions do not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD. Conclusions: Significant numbers of PLWD have comorbid conditions such as stroke, diabetes and VI. The presence of dementia complicates the delivery of health and social care and magnifies the difficulties that people with long-term conditions experience. Key elements of good care for PLWD and comorbidity include having the PLWD and family carer at the centre, flexibility around processes and good communication which ensures that all services are aware when someone has a diagnosis of dementia. The impact of a diagnosis of dementia on pre-existing conditions should be incorporated into guidelines and care planning. Future work needs to focus on the development and evaluation of interventions to improve continuity of care and access to services for PLWD with comorbidity. Funding: The National Institute for Health Research Health Services and Delivery Research programme. |
| first_indexed | 2024-12-11T11:10:41Z |
| format | Article |
| id | doaj.art-83fd7b8112604f9cb4accf2a11863ee0 |
| institution | Directory Open Access Journal |
| issn | 2050-4349 2050-4357 |
| language | English |
| last_indexed | 2024-12-11T11:10:41Z |
| publishDate | 2016-02-01 |
| publisher | National Institute for Health Research |
| record_format | Article |
| series | Health Services and Delivery Research |
| spelling | doaj.art-83fd7b8112604f9cb4accf2a11863ee02022-12-22T01:09:33ZengNational Institute for Health ResearchHealth Services and Delivery Research2050-43492050-43572016-02-014810.3310/hsdr0408011/1017/07Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem)Frances Bunn0Anne-Marie Burn1Claire Goodman2Louise Robinson3Greta Rait4Sam Norton5Holly Bennett6Marie Poole7Johan Schoeman8Carol Brayne9Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UKCentre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UKCentre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UKInstitute for Health and Society, Newcastle University, Newcastle upon Tyne, UKPRIMENT Clinical Trials Unit, Research Department of Primary Care and Population Health, University College London Medical School, London, UKDepartment of Psychology, Institute of Psychiatry, King’s College London, London, UKDepartment of Public Health and Primary Care, University of Cambridge, Cambridge, UKInstitute for Health and Society, Newcastle University, Newcastle upon Tyne, UKEast London Foundation Trust, London, UKDepartment of Public Health and Primary Care, University of Cambridge, Cambridge, UKBackground: Among people living with dementia (PLWD) there is a high prevalence of comorbid medical conditions but little is known about the effects of comorbidity on processes and quality of care and patient needs or how services are adapting to address the particular needs of this population. Objectives: To explore the impact of dementia on access to non-dementia services and identify ways of improving the integration of services for this population. Design: We undertook a scoping review, cross-sectional analysis of a population cohort database, interviews with PLWD and comorbidity and their family carers and focus groups or interviews with health-care professionals (HCPs). We focused specifically on three conditions: diabetes, stroke and vision impairment (VI). The analysis was informed by theories of continuity of care and access to care. Participants: The study included 28 community-dwelling PLWD with one of our target comorbidities, 33 family carers and 56 HCPs specialising in diabetes, stroke, VI or primary care. Results: The scoping review (n = 76 studies or reports) found a lack of continuity in health-care systems for PLWD and comorbidity, with little integration or communication between different teams and specialities. PLWD had poorer access to services than those without dementia. Analysis of a population cohort database found that 17% of PLWD had diabetes, 18% had had a stroke and 17% had some form of VI. There has been an increase in the use of unpaid care for PLWD and comorbidity over the last decade. Our qualitative data supported the findings of the scoping review: communication was often poor, with an absence of a standardised approach to sharing information about a person’s dementia and how it might affect the management of other conditions. Although HCPs acknowledged the vital role that family carers play in managing health-care conditions of PLWD and facilitating continuity and access to care, this recognition did not translate into their routine involvement in appointments or decision-making about their family member. Although we found examples of good practice, these tended to be about the behaviour of individual practitioners rather than system-based approaches; current systems may unintentionally block access to care for PLWD. Pathways and guidelines for our three target conditions do not address the possibility of a dementia diagnosis or provide decision-making support for practitioners trying to weigh up the risks and benefits of treatment for PLWD. Conclusions: Significant numbers of PLWD have comorbid conditions such as stroke, diabetes and VI. The presence of dementia complicates the delivery of health and social care and magnifies the difficulties that people with long-term conditions experience. Key elements of good care for PLWD and comorbidity include having the PLWD and family carer at the centre, flexibility around processes and good communication which ensures that all services are aware when someone has a diagnosis of dementia. The impact of a diagnosis of dementia on pre-existing conditions should be incorporated into guidelines and care planning. Future work needs to focus on the development and evaluation of interventions to improve continuity of care and access to services for PLWD with comorbidity. Funding: The National Institute for Health Research Health Services and Delivery Research programme.https://doi.org/10.3310/hsdr04080mixed-method studydementiacomorbiditydiabetesstrokevision impairmenthealth services research |
| spellingShingle | Frances Bunn Anne-Marie Burn Claire Goodman Louise Robinson Greta Rait Sam Norton Holly Bennett Marie Poole Johan Schoeman Carol Brayne Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem) Health Services and Delivery Research mixed-method study dementia comorbidity diabetes stroke vision impairment health services research |
| title | Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem) |
| title_full | Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem) |
| title_fullStr | Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem) |
| title_full_unstemmed | Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem) |
| title_short | Comorbidity and dementia: a mixed-method study on improving health care for people with dementia (CoDem) |
| title_sort | comorbidity and dementia a mixed method study on improving health care for people with dementia codem |
| topic | mixed-method study dementia comorbidity diabetes stroke vision impairment health services research |
| url | https://doi.org/10.3310/hsdr04080 |
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