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P10. Post-diagnostic support

Detailed programme, abstracts and poster presentations

P10.1. Evaluation of a national post-diagnostic support programme for people with dementia and carers in Ireland

PIERCE Maria

Independent researcher, Dublin, Ireland

There is growing evidence on the importance of a timely dementia diagnosis, and increasing recognition that people who receive a dementia diagnosis can benefit from post-diagnostic supports. In Ireland, the National dementia office (NDO) has convened the dementia Post-Diagnostic Support (PDS) project to support the implementation of Ireland’s national Dementia Strategy and address support gaps for people after receiving a dementia diagnosis. The NDO’s PDS grant scheme has funded 18 projects across Ireland to deliver PDS programmes (i.e. cognitive stimulation therapy, cognitive rehabilitation and/or psychoeducation programmes) to people with dementia and/or family carers. An evaluation is examining the implementation and impact of the grant-funded PDS programmes. Evaluation objectives are to describe the PDS programmes, implementation processes, and assess the impact for people with dementia and family carers. The evaluation includes a process evaluation. In consultation with programme providers, a data collection tool has been developed, and used by projects to collect information about persons with dementia/family carers availing of the programmes and their access to and participation in them. Interviews with project leads and staff delivering the programmes are being conducted. To assess programme impact, outcomes assessment forms have been developed with input from people with dementia, family carers, and programme providers. The forms are tailored to programmes types and collect information from people with dementia/family carers about their responses to the programmes. The results from the evaluation will be presented, including findings on the processes of developing, adopting and delivering PDS programmes in different contexts, and issues faced in programme planning, staffing and delivery. A profile of people with dementia/family carers availing of the programmes and information on their participation and responses to the programmes will be reported. The findings will offer important and practical lessons for PDS design and implementation, of relevance to health care professionals and policymakers.

P10.2. Peer counselling for early stages dementia

KRIPP Monika, POTOTSCHNIGG Angela, PURINGER Johanna

Alzheimer Austria, Vienna, Austria

Peer counselling exists since the beginning of this year in Austria, for people with early stage dementia. It is a pilot project supported by funding of the social insurance in Austria. Two times a month, a person with early stage dementia is assisted to talk to others either in the office of Alzheimer Austria in Vienna or at their home in the capital. It should be available also for people living in other areas of Austria via Skype or phone. So far this special offer has not been asked for by people living with cognitive disorders. Face to face the project is sufficiently demanded to gather some learnings that we like to share in our presentation. Supporters for the counseling are volunteers from Alzheimer Austria. Angela Pototschnigg, peer counselor, shares her experience and learns from her peers. The offer is free of charge. As there is little to none experience with peer counseling in the german speaking part of Europe, we like to present our findings.

P10.3. INDA© PROGRAM How to involve different communities and professionals into the INDA activities?

ÁGNES Egervári, NORBERT Vajda

Social Cluster assocciation, Budapest, Hungary

Interprofessional Dementia Approach (INDA©) is an innovative program developed by the Social Cluster in Hungary for the care of elderly people living with dementia. Its key words are: relationships and communication - not only inside the care system, but also with other different professionals, with the families and the policymakers. The INDA2 Project (2018-2020) concentrate on local post diagnostic support.

Every second citizen in Hungary has insufficient health literacy. Those people do not know when, where to turn to if having any health problem. In case of dementia, the taboo and the stigma makes the situation even more challenging.

How to improve knowledge and motivation?

We cannot presume people are motivated, but instead we must find the way to their circles. We organize workshops for elementary school teachers, experts of care services and not least for policy officers and home guards. Well-qualified different professionals, after proper information and training, can recognize challenging signs and that means an opportunity for adequate intervention. We gained experience how the size of the population makes significant influence on the adequate working methods. We will demonstrate, what are those technics which can fit into small villages and what are those methods, which we found useful in bigger cities.

Large families with different generations are already very rare. For young generations, the daily relationship with the elderly is not natural. That’s why one of our latest activities aims to involve teachers into the teamwork. Representatives of different professionals must exchange their views on dementia care in each settlement, regularly. We provide opportunities where teams can be formed. Support and availability does not equal with the physical presence of experts, so they have to have a proactive approach.

Our ultimate goal is to make strong relations, and let local members create dementia friendly communities.

P10.4. Post diagnostic support in the UK: Fragmentation and fragility

WHEATLEY Alison, BRUNSKILL Greta, BAMFORD Claire, ROBINSON Louise

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. One component of the project involves exploring current models of post diagnostic support to find out which aspects work well and identify where changes are needed.

Current UK models were identified through desk-based research and an internet mapping survey. We conducted qualitative, semi-structured telephone interviews with managers and commissioners of selected services. These focused on their experiences of providing or commissioning post diagnosis support, views on aspects of the recent NICE guidelines for dementia care, and the role of primary care in providing post diagnostic support. Initial analysis has highlighted the fragmentation and fragility of existing services, with a lack of coherent pathways, involvement of multiple agencies, and a shifting service landscape due to short-term funding. Varying levels of primary care involvement were described. Barriers to primary care led post diagnostic support included conflicting priorities; lack of skills and knowledge; and a perceived lack of interest in dementia among some GPs. Broader challenges to providing post diagnostic support were a service-led approach with an emphasis on ‘plugging’ people into existing services rather than providing person-centred care; managing caseloads; and difficulties in capturing outcomes. Some examples of joined-up services were identified; this included a ‘frailty hub’ involving weekly meetings of primary care, secondary care and neighbourhood services where individual patients were discussed.

The next phase of the project will focus on a small sample (up to six) of services selected from this initial work. It will involve observation of service delivery and interviews with frontline staff, people with dementia, and informal carers.

P10.5. Dementia Connect

FOSTER Helen

Alzheimer's Society, London, United Kingdom

There are 850,000 people with dementia in the UK, with numbers set to rise to over 2 million by 2051. Dementia not only affects those diagnosed, but their family and friends too. There are estimated 670,000 unpaid carers for people with dementia in the UK. Dementia is the UK’s most urgent, yet hidden, social care crisis.

Timely diagnosis and support is essential in helping people make decisions about their future care needs. The benefits in confirming a diagnosis and putting a care package in place early include: better future planning and access to services; addressing risks and support needs, including financial, self-care, social supports, risk minimisation; and identifying carers needing support.

Alzheimer’s Society’s new service, Dementia Connect, our new multi-channel information, advice and support service will give people affected by dementia access to tiered advice, support and self-management services, and is named as a solution within the NHS Long Term Plan.

Referral to Dementia Connect ensures that health and social care professionals have a single point of referral to connect the person with the vital practical support they need, working hand in hand with the health and care support they receive. Dementia Connect will provide long term support, preventing crisis, reducing isolation, and easing pressure on underfunded councils.

Unpaid carers account for around £11.6 billion of the economic cost of dementia, providing 1.3 billion hours of care a year, yet many are struggling in silence, often dealing with stress, depression and ill health.

Dementia Connect advisers will contact the carer directly and develop a tailored support plan. We help them access resources, provide information and refer to partner providers who enhance our support. We keep in touch, making regular catch up calls to ensure that if their situation changes or needs increase they have the right support available to them.

P10.6. “It gets you out”: Using social health to evaluate a dementia friendly walking group programme

ROBERTSON Jane1, GIBSON Grant1, PEMBLE Catherine1, HARRISON Rog2, STRACHAN Kim2, THORBURN Sheila2

1University of Stirling, Stirling, United Kingdom, 2Volunteer researcher, University of Stirling, Stirling, United Kingdom

Background: Social health (the potential to fulfil one’s potential, to manage life independently and participate in meaningful activities with others) is gaining ground as a means of understanding both the multifaceted nature of living with dementia, and how to provide support services which enhance wellbeing among those affected (Dröes et al. 2017). Outdoor activities such as walking can bring numerous benefits in relation to both physical and social health, however questions arise about how services, groups or communities can best support people with dementia to access the outdoors. Adopting a social health perspective, this presentation explores how a national dementia friendly walking group programme contributed to wellbeing among people living with dementia attending them.

Methods: Drawing on the expertise of three older people trained in research methods, we carried out walking interviews, collected photographic images, and conducted focus group discussions with people living with dementia who attended six dementia friendly walking groups, supported by a UK walking charity. Thematic analysis was applied to analyse these data.

Results: Five themes emerged which illustrated the benefits of participating in structured outdoor walking groups in relation to social health: being with other people, being outdoors, ethos and atmosphere, feeling secure, and leadership and organization.

Conclusions: The findings demonstrated that walking groups played an important part in enabling people with dementia to access the outdoors, to engage in physical activity and to socialise with other people within a safe and secure natural environment. In doing so, taking part led to significant benefits in terms of participants’ social health. The walking group programme was a powerful example of how to promote inclusive access to physical outdoor activities, and involve people with dementia with their local communities, and suggests that such programmes are well-placed to support the social health of those living with dementia.

 

 
 

Last Updated: Wednesday 16 October 2019

 

 
  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
 
 

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