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P6. The Actifcare study

Detailed programme and abstracts

P6.1. Relationship quality perception of spouses and adult child carers of people with dementia

MARQUES Maria, WOODS Bob, GONÇALVES-PEREIRA Manuel and the Actifcare Workgroup

Introduction: For many people with dementia, quality of life is intrinsically related to the relationship with a family carer, often of long-standing. Typically, the carer is a spouse or adult child, but we do not know how the quality of relationship differs in these distinctly different types of relationship. The Actifcare (ACcess to Timely Formal Care) EU-JPND project provides an opportunity to address this issue, with people with dementia and their families, in eight European countries.

Methods: Cross-sectional data was analyzed for 425 community-dwelling people with dementia and their family carers (67% spouse/partners; 33% adult-child), The Positive Affect Index was used as a measure of relationship quality. This data was augmented with qualitative data from focus groups (n=15) and interviews with carers (n=56) from the Portuguese Actifcare site, analyzed specifically focusing on relationship quality.

Results: No significant differences in the perception of relationship quality were evident between the two groups overall, although there were differences at an item-level (e.g. adult children scored lower on shared activities and similarity of views). For adult child carers relationship quality was explained mostly by carer characteristics (e.g. age; stress) rather than person with dementia characteristics. For spouses, both carer and person with dementia variables (e.g. neuropsychiatric symptoms of the person with dementia) predicted relationship quality. The qualitative data showed differences linked to pre-caregiving quality of relationship, social support and access to/ use of formal care services. Spouses were most reluctant to access/use formal services, such as home care or day centre, especially if they were women.

Discussion/Conclusions: Whilst spouses/partners and adult children may report similar levels of relationship quality, the factors contributing to this perception appear different. Understanding relationship quality will assist in identifying how best to maintain quality of care and support carers who wish to maintain care at home.

P6.2. Access to formal care for people with dementia: Findings of interview studies in eight European countries

STEPHAN Astrid, BIEBER Anja, BRODA Anja, MEYER Gabriele

Background: The timely use of community services is supposed to enable people with dementia to live at home as long as possible and to relieve family carers. However, access to community services seems to be gained late in the dementia trajectory.

Methods: As part of the transnational project Actifcare (including Germany, Ireland, Italy, Netherlands, Norway, Portugal, Sweden and United Kingdom), barriers and facilitators when using formal community care as experienced by people with dementia, carers and healthcare professionals were explored. Across countries, 55 focus groups with 266 participants were conducted. Consecutively, strategies enhancing service use as suggested by national political decision-makers/influencers were assessed by conducting 38 expert interviews. A summarising qualitative content analysis was performed and consecutively national findings were synthesised.

Results: Using formal community care seems to be influenced by psychosocial factors of people with dementia and informal carers together with characteristics of healthcare professionals and system-related aspects. Findings highlight the impact of beliefs of people with dementia and informal carers (e.g. meaning of caregiving). Using formal care is often considered a threat to individual independence. Since people with dementia try to stay independent as long as possible they seek to avoid formal care. Political decision-makers/influencers identified good-practice strategies of dementia care that reflect the explored barriers and facilitators (e.g. care coordinator, proactive person-centred services, and raising public awareness). Nevertheless, implementation still seems to be challenging across countries.

Conclusions: The question needs to be answered how formal care can be modified towards enhancing the independence of people with dementia in order to best support people with dementia and their families at home. Further research should investigate how recommended strategies can be appropriately implemented.

P6.3. Cohort study on factors associated with the (non)-utilisation of formal care services in Europe: Findings of the European Actifcare study

KERPERSHOEK Liselot, DE VUGT Marjolein, WOLFS Claire, WOODS Bob, JELLEY Hannah, ORRELL Martin, STEPHAN Astrid, BIEBER Anja, MEYER Gabriele, SELBAEK Geir, HANDELS Ron, WIMO Anders, HOPPER Louise, IRVING Kate, MARQUES Maria, GONÇALVES-PEREIRA Manuel, PORTOLANI Elisa, ZANETTI Orazio, VERHEY Frans, and the Actifcare Consortium

Objective: The Actifcare cohort study investigated service use, needs and quality of life of community-dwelling people with mild to moderate dementia and their informal carers. Actifcare aims to increase our understanding why people with dementia and their carers use, or fail to use formal care services. In addition, the potential inequity of access to and delivery of services was investigated.

Method: A prospective one-year cohort study was conducted with 451 dyads (person with dementia and their carer) in eight European countries. Follow-up measurements took place at 6 and 12 months after baseline. Logistic regressions were carried out to investigate baseline predictors of formal care use at follow-up, and to assess potential inequity in access.  In-depth interviews were conducted after 12 months to explore barriers, facilitators and experiences regarding access to care.

Results: Predictors for formal care use were a lower score on instrumental- and daily activities of life questionnaires, the person with dementia living alone, having a higher educated informal carer, and the informal carer visiting a support group. Older and higher educated people with dementia and younger carers found access to home personal care easier, and lower educated carers were more likely to be admitted sooner. These findings indicate inequity in access to care. Qualitative results showed among others that there is a lack of information about available services, and that having a key contact person is crucial.  Furthermore, needs should be taken into account when finding the right type of care, and attitudes towards care usually shift as disease severity increases.

Conclusion: These results help to define best-practice strategies for access to formal care in dementia across Europe, enabling people with dementia and their carers to receive the right amount and intensity of formal care when and where needed, and to increase their quality of life.

P6.4. Health economics of access to and use of formal care in 8 European countries

JANSSEN Niels, HANDELS Ron, SKÖLDUNGER Anders, KERPERSHOEK Liselot, DE VUGT Marjolein, WOLFS Claire, WOODS Bob, JELLEY Hannah, ORRELL Martin, STEPHAN Astrid, BIEBER Anja, MEYER Gabriele, SELBAEK Geir, HOPPER Louise, IRVING Kate, MARQUES Maria, GONÇALVES-PEREIRA Manuel, PORTOLANI Elisa, ZANETTI Orazio, SJÖLUND, Britt-Marie, VERHEY Frans ,WIMO Anders, and the Actifcare Consortium,

Background: People with dementia become increasingly dependent and as the disease progresses formal care services are needed to support the caregiver and person with dementia. We aim to understand the costs and consequences of untimely access to formal care, to raise awareness, prioritize, and focus efforts to improve the lives of people with dementia and their caregivers.

Methods: We used the data of the Actifcare cohort of 451 community dwelling people with dementia in 8 European countries, who were followed for one year. A cost-consequence analysis (CCA) was used to analyze quality of life, resource use and care costs. Consequences of untimely access to care, defined as having an unmet need, were analyzed using multilevel regression analysis.

Results: CCA results showed that average annual costs of persons with dementia were € 17,617 and differed between the countries, ranging from € 8,416 (Portugal) to € 23,485 (Ireland), with informal care being the main driver of these costs. The number of unmet needs was not associated to costs, but was associated to a lower quality of life. Of the 24 care need categories only an unmet need on mobility/falls and psychological distress was associated to lower quality of life.

Conclusions: We hypothesized that unmet needs would result into higher costs related to emergency care to compensate for the unmet need, and a reduction in quality of life. We found that untimely access to care did not impact short-term costs but did reduce quality of life. Future research should assess the longer-term effects as well as focus on strategies to prevent unmet needs as this could potentially increase the quality of life of persons with dementia.

P6.5. Development of best practice recommendations to enhance access to formal community care services

MICHELET Mona, RØSVIK Janne, VERHEY  Frans, DE VUGT Marjolein, MEYER Gabriele, WOODS Bob, WIMO Anders, IRVING Kate, GONCALVES PEREIRA Manuel,  ZANETTI Orazio, SELBÆK Geir, on behalf of the Actifcare consortium

Background and aims: People with dementia and their informal carers are found to use community services, such as home support, day care, respite care or counselling less often than medical services even though these services may be very useful in their situation. Studies have found that this group often do not receive services of the type and quality that they need, and that they experience much difficulty accessing home- and community based services. The JPND project Access to Timely Formal Care (Actifcare) has investigated factors related to inequalities in access to services.

The aim of work package 5 in Actifcare was to develop best practice recommendations to enhance access to community care services. 

Methods: The participating Actifcare teams suggested statements describing measures to enhance access based on the deliverables from the other Actifcare work packages as well as their own expertise.  The received statements were processed and phrased into 72 statements for rating by 82 European experts in an email based Delhi process with two rounds of rating. The experts are professional scientific, clinical and administrative experts as well as experts by experience, i.e. people with dementia and informal carers. The European Working Group for People with Dementia provided valuable feedback in the process of phrasing the statements and five of them participated as experts in the Delphi ratings.

Results: Based on the statements that reached consensus in the Delphi process, 26 Best practice recommendations were made.  Measures were taken to safeguard the perspective of the experts by experience in this process. The recommendations are divided into two categories: measures to enhance access directly and measures to enhance access indirectly.

Recommendations for the implementation of the Best practice recommendations have been made for each of the participating countries; Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and United Kingdom.

P6.6. Experiences and Lessons Learned during the Dissemination and Communication of Actifcare Project Findings

HOPPER Louise, IRVING Kate, on behalf of the Actifcare Study Group

Dissemination and communication of research findings are an essential part of every research project. When effective, they increase the visibility of research results and enhance the likelihood of achieving clinical, societal, economic and scientific impact. Communicating the message that there are effective ways of supporting people with dementia in the community, an awareness of the barriers to and the facilitators of effective care, and understanding the cost-effectiveness of such care were essential to the success of the Actifcare (Access to Timely Formal Care) project. We present our experience of communicating Actifcare findings and best practice recommendations to a variety of target audiences including community care practitioners, people with dementia, family caregivers, national health services, patient advocacy groups, dementia researchers and the general public. In addition to the use of online (website, Facebook and Twitter) and print (awareness materials, newsletters and interviews) media, we make recommendations for future projects based on our experiences: for example, the production and distribution of short informative videos that present results accessible to a lay audience and raise public awareness of the project’s key messages; contribution to shared platforms (e.g. IPECAD) to share knowledge with researchers and other related projects; the establishment of translational panels of key political, policy and clinical decision-makers, patient advocacy groups and experiential experts to jointly discuss how to translate findings into practice. The combination of these varied dissemination strategies have enabled the Actifcare team to effectively reach disparate audiences within the eight participating counties and more widely across Europe. In doing so, Actifcare can influence audience views of best practice formal community-based dementia care, and the equity, health and quality of life impact of current health and social care policies with the aim of fostering positive policy change.



Last Updated: Monday 23 October 2017


  • Acknowledgements

    The 27th AE Conference in Berlin received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Deutsche Alzheimer Gesellschaft e.V. gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche