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P22. Involving people with dementia

Detailed programme and abstracts

P22.1. The Scottish Brain Health Register: an evidence-based approach to integrating research into clinical services

KILLIN Lewis1, PEARSON Jim2, RITCHIE Craig3, GREGORY Sarah1, WINKLER Krista4, DOLAN Clare1, HUNTER Matthew1, JOBSE Hannah1, SPARKS Sarah1, INGRAM Catriona5, GARDINER Rosemary6

1Edinburgh Dementia Prevention, Edinburgh, United Kingdom, 2Alzheimer Scotland, Glasgow, United Kingdom, 3Brain Health Scotland, Edinburgh, United Kingdom, 4University of Edinburgh, Berlin, Germany, 5NHS Greater Glasgow and Clyde, Glasgow, United Kingdom, 6NHS Lothian, Edinburgh, United Kingdom

Recruitment is a long-standing challenge in dementia research (Fargoet al.,2016) and affects the rate at which scientists discover new evidence. Research poised to impact the lives of those living with dementia (PWD;e.g., developing new treatment or evaluating post-diagnostic care) requires that these same people are given the opportunity to take part in studies. Therefore, the presence of research opportunities in clinical services is critical; this has been the ambition of the Scottish Brain Health Register (SBHR).

We adopted the Theory Of Change methodology (TOC; Connell et al., 1995) to evaluate how to establish SBHR into a memory service in Edinburgh, Scotland. Following ToC guidelines, we adopted a mixed-methods approach to create a situation analysis, intervention plan and impact assessment. This included a review of referral rates of PwD to SBHR and two sets of semi-structured interviews with clinic staff.

Data prior to our intervention demonstrated that although its membership was evenly split between PwD and healthy controls, only 17.3% of PWD seen in the clinic registered to SBHR, and most who were not were labelled as “not suitable [for research]”. Members of the clinical team were happy to discuss research with PwD, although requested more information about what research involves.  In response we employed regular clinician-researcher meetings and one-to-one staff training sessions. In March 2020 the rate of PwD referral onto SBHR remained at pre-intervention levels. Post intervention, clinic staff continued to lack confidence to communicate benefits of research participation to patients.

The cases where PwD were not offered the opportunity to take part in research suggests that many assumptions still remain about what participation entails. While it may be possible to establish regular dialogue about research in a clinical setting, it is critical that researchers communicate the exact process and potential benefits of research participation.

P22.2. Sexual expression in persons living with dementia and influence on nursing care


Queen Margaret University, Edinburgh, United Kingdom

Introduction: I am a final-year PhD Candidate at Queen Margaret University, exploring sexual expression in persons living with dementia. Research shows that sexual expression provides emotional and physical benefits throughout life and does not diminish with age or loss of capacity (Rennie et al 2017). However, sexual expression is often overlooked and is considered the most difficult ‘symptom’ of the behavioural and psychological symptoms of dementia (BPSD) model to manage by nurses (Tucker 2010). Other literature also demonstrates that the idea of sensuousness might be useful to this research.

Aims/Objectives: This study aimed to explore relationship between sensuousness and sexual expression.   

Methodology: Drawing on an existential phenomenology and person-centred theory with additional participatory research principles, I had conversations with persons living with dementia to explore the nature and meaning of sexual expression; and I observed nurses and had dialogues with them and families at work to find out about their experiences of sexual expression within caring.

Results: This study aimed to generate new knowledge on the meaning of sexual expression in persons living with dementia for person-centred practice and theory. Findings will enhance nurses understanding of how to respond to sexual expression in more person-centred ways. Findings are organised around: (1) nurses understanding of sexual expression for persons living with dementia and connection to personhood; (2) facilitating space and privacy for sexual expression; (3) one’s own perspective on sexual expression and intimacy; and (4) the values and needs of persons with dementia (5) sexual expression as sensuousness.

Conclusions: Practically, this study generates new principles for how nurses can provide more person-centred care when caring for persons living with dementia. This research challenges the BPSD model and its underpinning ideas and reframes sexual expression within sensuousness.     

P22.3. Innovative methods for involving people with dementia and carers in the policy making process


1NUI Galway, Galway, Ireland, 2Alzheimer Society of Ireland, Sligo, Ireland

Patient and public involvement (PPI) in research is becoming well established. There are fewer examples of PPI in the policy making process, particularly for groups whose ability to participate may be affected by a disability, such as people with dementia. However, the principles of engagement and inclusion in democratic processes are as important for this group as for other citizens. We used three innovative methods to increase the involvement of people with dementia and family carers in the policy making process.

First, a Policy Café was co-developed and involved ten people with dementia who discussed policy developments they wanted to see in relation to diagnosis, post-diagnosis and home care provision. Second, a Carer’s Assembly of 30 caregivers of people with dementia used a citizen’s assembly model to identify the priorities of family carers in relation to services and supports. Third, a Policy Dialogue was organised in partnership with the Department of Health to discuss the development of a new statutory home care scheme with 24 stakeholders.

The key messages from the Policy Café and the priorities identified by carers were brought to the Policy Dialogue through film, illustration and direct PPI representation at the meeting. This provided a direct access route to inform thinking on the new home care scheme.

 We found that involving people with dementia in policy development requires time and creativity to facilitate and maximise their involvement. Co-production is essential to ensure the priorities of people with dementia and carers are identified and expressed. The use of innovative methods and different media, such as film and illustration, contributes to meaningful involvement and accessible outputs for people with dementia. Policy-makers need to hear the direct and authentic voice of people with dementia and carers when making important policy decisions.

P22.4. Using public transport: experiences of people with dementia

BLAKE Cathal

School of Psychology, Dublin City University, Dublin, Ireland

Public transport is important for mobility allowing people to travel longer distances when compared to walking and cycling, which is important for societal participation. Increasingly, social participation is seen as an important contributor to health and wellbeing. However, the increasing proportion of people with cognitive impairments such as dementia, may mean that for this cohort, the use of public transport is compromised. This is an important issue as a person who is not autonomously mobile may have to rely on the support of family, relatives, friends, or social services. A significant body of research concentrates on individuals with physical impairment, with a paucity of research focusing on individuals with cognitive impairments.

Members of the Irish Dementia Working Group raised the issue of public transport for this cohort. The group expressed concerns regarding lack of public transport, fear around independence and in particular their worry about what happens when a person can no longer drive, and decided to research this topic. Utilising Public Patient Involvement (PPI) the group wanted to explore the experiences of people with dementia using public transport across all aspects of the “The Travel Chain”.

The overall aim of the research was to capture the experiences of members as they made a variety of journeys on public transport. The specific objectives of the study were to:

  • Review the literature on the issue of public transport and access for people with dementia.
  • Conduct a qualitative analysis of the experiences people with dementia have when using public transport across the "Travel Chain".
  • Collate the findings from this analysis and subsequent recommendations.

Detailed thematic analysis of the interview transcripts and participants’ diaries and field notes uncovered both dementia specific and environmental factors. Positive experiences facilitated public transport use, while negative experiences acted as barriers for the participants.

P22.5. Experiences with the first supported self-help group in Luxembourg

SCHMITT Hildegard

Association Luxembourg Alzheimer, Luxembourg, Luxembourg

Background: In 2017 the first supported self-help group for people in an early stage of dementia was established in Luxembourg. The prevalence rate of dementia does not differ from that in other western European Countries. Nevertheless, Luxembourg`s situation is special: being an immigration country with 48% of the population having a foreign nationality, resulting in a high variety of cultural backgrounds.

Questions: Besides the overall aim to maintain and improve the participants quality of life, the paradigm shift that emerged in recent years, should be put into practice: not professional caregivers but people with dementia themselves are the experts of their own life. How to ensure that they can continue to live in a self-determined way as long as possible? How can we get society to understand that after the diagnosis of dementia an autonomous life is possible for years/decades?

Method and Outcome: In 2018 with an experience of 1.5 years, the group concept was evaluated by the means of qualitative interviews with the participants. The following insights we have gained have already been (partly) implemented: in addition to the monthly discussion-meetings the participants wanted to have more common activities (to visit former group members, museums). Moreover, they asked for support to enhance the participation in their community life outside the group. Having in mind the needs and resources of the group members as well as the readiness of the public, these aims can only be reached step by step. One first step on our way towards a wider audience was to seek the exchange with other professional caregivers from our services.

Perspective: In autumn 2020 we will be able to share new experiences of how the corona crisis has affected group work and what possible consequences will arise in the longer term.



Last Updated: Tuesday 30 June 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