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P5. Post-diagnostic support

Detailed programme and abstracts

P5.1. How can Meeting Centres support people affected by dementia to adjust to change during a period of physical distancing?


Association for Dementia Studies, Worcester, United Kingdom

A Meeting Centre (MC) is a local resource, operating out of ordinary community buildings, that offers on-going warm and friendly expert support to people and families affected by dementia.  A key aspect is regular face to face contact with other people. MCs, as part of the UK Meeting Centre Support Programme (UK MCSP) established and led by the Association for Dementia Studies, University of Worcester, rapidly needed to find innovative ways to support those isolated at home during the pandemic.

Approaches included activity packs, telephone calls, handwritten letters, weekly newsletters and the use of technology such as Zoom and WhatsApp for seated exercise, poetry reading, singing and group and individual contact and carer meetings.

As part of the UK MCSP, MCs are required to collect data which usually covers attendance data; baseline data for new members; satisfaction questionnaires every six months; referrer feedback; contextual statements and case studies and health and well-being at the start then every six months. During the COVID-19 period this data was adapted to increase the health and well-being questionnaires to every three months and extended to include semi-structured interviews and focus groups with stakeholders to develop an understanding around what people affected by dementia were experiencing as the pandemic progressed.

Perspectives from all stakeholders were analysed to inform strategies to support people to adjust to their changing situation due to a diagnosis of dementia during a period of global instability. Results of the study will be presented together with an outline of a set of guidelines as to how community-based interventions such as MCs can continue to support people with dementia at a distance.

Brooker, D., Evans, S., Droes, R. M., (2016),Framing outcomes of post-diagnostic psychosocial interventions in dementia: The Adaptation-Coping Model and Adjusting to Change. Working with Older People. Vol 21: Issue 1

P5.2. Planning Dementia-Capable Community-based Housing for Adults with Intellectual Disability


University of Illinois at Chicago, Rockport, Maine, United States

The WHO notes that adults with intellectual disability (ID) are a high-needs population among persons with dementia (this includes adults with Down syndrome [DS] -- a noted risk factor for Alzheimer’s disease). Provider organizations are challenged by increasing numbers of adults with ID needing specialty dementia care in community settings.  Questions arise as to what to consider when planning structural and functional specialty dementia-care housing for persons with ID.  A longitudinal study, begun in 2011, is following 3 group homes (N/each=5) providing specialty dementia-care to 15 adults with ID and provides insights for planning specialty housing care. Data show a pattern for admission ages (3 age-of-admission clusters - ꭕ=50.5; ꭕ=57.1; χ=66.8); length of stay (ꭕ=4.12 yrs); mortality (ꭕage-death=65.4; ID=69.3; DS=56.3); age at entry (ꭕ= 59.1); years from entry to death (ꭕ= 5.4 yrs); and multimorbidities (high number generally, but decreases among survivors). Staffing higher for homes with residents with advanced dementia. Home layouts are single floor with private and public spaces. Findings noted that adults with DS required earlier admissions but had more life-years in the GHs than older adults admitted at later age but who succumbed earlier to disease complications. Small group homes (GHs) are a viable option for in-community long term dementia care. General planning for dementia GHs should consider home lay-outs (aiding mobility, gathering, being barrier-free) and dementia care aids (bathing, quiet spacing, dining, exercising, etc.); transitions associated with varied trajectories of decline, earlier mortality linked to complexity of pre-existing conditions and progression of dementia; and changes in the focus of care needs over time (including advanced dementia and end-of-life care). Clinical planning should factor in age at entry, dementia-stage, type of dementia, mortality expectations and end-of-life care, status, patterns of care needs, dementia-related behaviors, aging-related issues, and probable trajectories of decline of the residents.

P5.3. Exploring models of post diagnostic support in England


Newcastle University, Newcastle upon Tyne, United Kingdom

The overall aim of the PriDem project is to develop and test new ways of providing post diagnostic support for people with dementia, with a focus on support led by primary care. We used qualitative methods to explore current models of post diagnostic support to find out which aspects work well and identify where changes are needed. We then selected six services from our initial work to explore in depth. This involved observation of service delivery as well as interviews and focus groups with health and social care professionals, people with dementia, and informal carers.

In this presentation, we compare three contrasting models of post-diagnostic support: a comprehensive secondary care-led model; a comprehensive Admiral Nurse-led model based in a GP practice; and a GP-led model covering multiple practices. The models varied along a number of axes, including where, when, how often, and by whom services were provided. The exact nature of the post-diagnostic support provided also varied; while each of the services offered regular review and follow up for people with dementia, other features such as access to rapid advice from specialist mental health services or shared access to primary care notes were not available in every service. Services also varied according to how well they were embedded within the local dementia care pathway. We draw on our data from people with dementia and their families to evaluate some of the benefits and challenges of each approach for service users, as well as data from staff in linked local services to explore the benefits and challenges from a professional perspective.

Data collected as part of this project are currently being used as part of a co-design process to inform the development of a new intervention to provide post-diagnostic support for people with dementia.

P5.4. Needs of people with dementia and their caregivers: The Erlangen Needs Assessment in Dementia (ENA-D)

DIETZEL Nikolas1, KÜRTEN Lara1, MEUER Sebastian1, ICKLER Dorothee1, GRAESSEL Elmar2, KOLOMINSKY-RABAS Peter1

1Interdisciplinary Center for Health Technology Assessment (HTA) and Public Health (IZPH), Friedrich-Alexander University Erlangen-Nürnberg (FAU); Project consortium ‘Digital Dementia Registry Bavaria – digiDEM Bayern‘, Erlangen, Germany, 2Center for Health Services Research in Medicine, Department of Psychiatry and Psychotherapy, University Hospital Erlangen, Friedrich-Alexander University Erlangen-Nürnberg (FAU); Project consortium ‘Digital Dementia Registry Bavaria – digiDEM Bayern‘, Erlangen, Germany

Background: 70% of the people with dementia (pwd) in Germany live in their home environment, cared by close relatives. In order to prevent caring relatives from becoming the invisible second patient, it is highly important to identify their needs. As existing instruments for needs assessment are extensive, complex, or not target-group-specific, we aimed to develop a compact needs assessment instrument as part of the research project ‘Digital Dementia Registry Bavaria (digiDEM Bayern)’.

Method: In a first step we conducted a focus group including professionals and caregivers as experts. Main objective was the identification of support services as foundation for the need’s expressions in the instrument. In a second step, the experts should evaluate the identified services according to the relevance for dementia care. The highest rated services (scale from 1 (not important) to 10 (important)) will be included in the instrument.

Results: 13 professionals and 4 caregivers participated in the focus group. In total, 72 different support services could be identified.

Conclusion: Caregivers experience multiple factors causing a high caregiver burden and are therefore reliant on support. The ENA-D facilitates caregivers to directly express their individual need of specific support services. Thereby, the ENA-D is easy to understand and of a small length, so that conduction is not overstraining. Using the ENA-D, supply gaps can be identified and transformed into a specific regional health care planning. Thus, the ENA-D is an important and compact needs assessment instrument that can be included in both scientific and consultation contexts.

Funding: digiDEM Bayern is funded by the Bavarian Ministry of Health and Care as part of BAYERN DIGITAL II (funding code: G42d-G8300-2017/1606-83).



Last Updated: Wednesday 30 September 2020


  • Acknowledgements

    The 30th AE Conference received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe gratefully acknowledges the support of all conference sponsors.
  • European Union
  • Roche