Integrated dementia care: A qualitative evidence synthesis of the experiences of people living with dementia, informal carers and healthcare professionals

Smith, Raymond L.; Martin, Anne; Wright, Toni; Hulbert, Sabina; Hatzidimitriadou, Eleni

doi:10.1016/j.archger.2021.104471

Cited by 20 publications

(23 citation statements)

References 42 publications

(174 reference statements)

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“…A comparable use of a person, a so-called care navigator, who coordinates the support and care of people with dementia, is recommended by Bernstein et al [ 50 ]. Integrated care is a further approach to a cross-sectoral, holistic and comprehensive care concept, which includes case-management [ 51 , 52 ].…”

Section: Discussionmentioning

confidence: 99%

The use of formal care for dementia from a professional perspective: a scoping review

Bergmann

Peper

Bieber

2022

BMC Health Serv Res

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Background and objectives The progressive character of dementia usually leads to a continuously increasing need for support. There is some evidence of late use of professional support during the disease course. We aim to provide an overview of aspects influencing access and use of formal care in dementia from the perspective of health and social care professionals. Additionally, the perspectives of professionals and people with dementia/informal carers will be compared. Methods We conducted a scoping review with a systematic literature search in Medline via Ovid in January 2019 and updated this in April 2020 and in May 2021. Publications were considered eligible when focusing on influencing aspects of the use of formal care or support for people with dementia in an outpatient setting from the perspective of health professionals. Included publications were critically appraised using the Mixed Method Appraisal Tool. We identified aspects of access to and use of formal care and support services. A consultation exercise with three specialised trained dementia care nurses was conducted to validate our results. Results We included 29 studies: n = 20 qualitative, n = 6 quantitative-descriptive, n = 3 mixed-methods. Various support services were identified, but a focus was on services for diagnostic and treatment of dementia. A wide range of influencing aspects (n = 15) describe the access to and use of formal care services. Aspects related to the complexity and structure of the healthcare system and the competence of professionals were frequently addressed. Second, attitudes and expectations of professionals, and experiences with people with dementia and their informal carers were identified. The dementia care nurses highlighted the importance of coordinated care to enhance dementia-specific competencies. Conclusions Health and social care professionals still describe barriers in accessing and using formal care due to various influences. Ways to improve access to and use of professional support in dementia should consider individual and system-level activities, as well as overarching aspects. Important topics are therefore education and training of professionals and coordinated dementia-specific care to provide adequate support for people with dementia and their relatives. Several professions may be involved in this increasingly important field, e.g., nurses with a dementia-specific training like dementia care nurses.

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Section: Discussionmentioning

confidence: 99%

The use of formal care for dementia from a professional perspective: a scoping review

Bergmann

Peper

Bieber

2022

BMC Health Serv Res

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“…The five themes identified in our work offer a structured approach to the review and suggest that involving social care and third sector professionals could help identify non-medical needs. This could also promote greater integration of services, which remains challenging, particularly for people with dementia and carers who may need support from multiple services [ 18 , 43 ]. Improved collaboration is a policy priority in England, with the introduction of Integrated Care Systems which aim to address systemic barriers to joined up services [ 44 ].…”

Section: Discussionmentioning

confidence: 99%

“…To meet the diverse needs of people with dementia and enable them to live as well as possible requires supportive government policies and coordinated input from health and social care services and the voluntary and community sector, together with initiatives such as dementia friendly communities [ 16 , 17 ]. There are, however, barriers to the delivery of integrated care including lack of funding, fragmented and fragile services, lack of shared information systems and challenges to interprofessional relationships [ 18 , 19 ]. The 2016 World Alzheimer Report recommended a task-shifted , task-shared approach with the development, and expansion, of primary and community-based post-diagnostic dementia support services, enabling secondary care to lead on diagnostic assessment and complex case management [ 1 ].…”

Section: Introductionmentioning

confidence: 99%

Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

et al. 2021

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Background There has been a shift in focus of international dementia policies from improving diagnostic rates to enhancing the post-diagnostic support provided to people with dementia and their carers. There is, however, little agreement over what constitutes good post-diagnostic support. This study aimed to identify the components of post-diagnostic dementia support. Methods We adopted a qualitative design using interviews, focus groups and observation to explore the perspectives of key stakeholders on the content of post-diagnostic dementia support. Purposive sampling was used to identify sites in England and Wales recognised as delivering good practice. Participants included 17 people with dementia, 31 carers, 68 service managers or funders, and 78 frontline staff. Interviews and focus groups were audio recorded and transcribed for analysis. Forty-eight sessions of observation were completed and recorded in fieldnotes. Components were identified through an inductive, thematic approach and cross-checked against national guidelines and existing frameworks; they were subsequently critically reviewed by a range of experts and our mixed stakeholder panel. Results Twenty distinct components of post-diagnostic support were identified, related to five themes: timely identification and management of needs; understanding and managing dementia; emotional and psychological wellbeing; practical support; and integrating support. The first and last of these were cross-cutting themes facilitating the delivery of a unique constellation of components of post-diagnostic support to each individual living with dementia or dyad at a particular time. Conclusions Our work offers an empirically based framework to inform the development and delivery of holistic, integrated and continuous dementia care from diagnosis to end of life. It highlights the relevance of many components to both people living with dementia and their carers. Since the framework was developed in England and Wales, further research is needed to explore the relevance of our components to other sectors, countries and care systems.

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“…Knowing other professionals personally and holding regular interdisciplinary meetings was identified as beneficial, as it facilitated communication and coordinated actions. Some studies have recognized the importance of interdisciplinary teams working together and of interprofessional communication in integrated care programs [ 24 , 25 ]. A qualitative study involving stakeholders from 17 European integrated care programs for patients with complex needs highlighted that the alignment of services and good relationships between professionals based on trust and facilitated by continuous communication are elements of a well-functioning integrated care process [ 26 ].…”

Section: Discussionmentioning

confidence: 99%

“…Distrust of the sustainability of the program was perceived, arising from the high turnover of PC health professionals. Some qualitative studies have discussed the need for time, resources and funding for planning integrated care programs [ 21 , 24 ], the lack of which constitutes an important barrier, for example, to providing access to formal dementia care [ 27 ] or high-quality integrated care for people living with dementia [ 28 ]. Our study included some patients with dementia, and their caregivers remarked upon the need for more frequent and continuous care because of the rapid progress of the disease.…”

Section: Discussionmentioning

confidence: 99%

Integrated Care Model Salut+Social Assessment by Professionals, Informal Caregivers and Chronic or Social Dependent Patients: A Qualitative Study

Gavaldà-Espelta

Lleixà-Fortuño

Martín

et al. 2022

IJERPH

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We explored the views of the professionals (from primary care and social services) and users (caregivers and patients) who participated in the clinical trial of the Salut+Social integrated care model to identify the implementation barriers and facilitators, to assess the impact on health and wellbeing and to obtain an assessment of the program. A qualitative descriptive study with a pragmatic, utilitarian approach was performed. Participants were recruited by purposive and convenience sampling. A focus group (FG) and in-depth interviews were conducted with professionals and users, respectively. Thematic content analysis was employed. A total of 11 professionals and 8 users participated in the FG and interviews, respectively. Seven themes were identified: (1) contextualizing the previous scenario; (2) achievements of the program from the professionals’ perspective; (3) facilitators and barriers of the integrated care model; (4) proposals for improving the integrated care model; (5) users’ assessment of the care received within the program framework; (6) users’ perception of the impact on health and wellbeing; (7) users’ demands for better care. Professionals reported improved coordination between services and highlighted the need for a protocol for emergencies and to strengthen community orientation. Users proposed more frequent home visits. This study shows the acceptability of the new model by professionals and the users’ satisfaction with the care received.

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Integrated dementia care: A qualitative evidence synthesis of the experiences of people living with dementia, informal carers and healthcare professionals

Cited by 20 publications

References 42 publications

The use of formal care for dementia from a professional perspective: a scoping review

The use of formal care for dementia from a professional perspective: a scoping review

Key components of post-diagnostic support for people with dementia and their carers: A qualitative study

Integrated Care Model Salut+Social Assessment by Professionals, Informal Caregivers and Chronic or Social Dependent Patients: A Qualitative Study

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