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P1. People with dementia

Detailed Programme, abstracts and presentations

P1.1. People with dementia in Scotland have learned to speak up and have their voices heard

Archie Latta

Archie Latta, a member of the Scottish Dementia Working Group, will focus on several key areas of the development of the group from its formation in 2002 through to their positive achievements over this time.

The group, currently chaired by Agnes Houston, was the brain child of the vice-chairman James McKillop and social researcher, Dr Heather Wilkinson. Both felt that the voice of people with dementia would be heard more clearly if people with dementia learned to speak out for themselves. The group then developed a partnership with Alzheimer Scotland, and although under their umbrella, the Scottish Dementia Working Group continues to be an independent voice of people with dementia in Scotland.

Formed in 2002, by some like-minded people with dementia in partnership with sympathetic professionals working in the field of dementia research and care, this national campaigning group has grown both in stature and in power and membership now stands at over one hundred.

This presentation will address the challenges of living with dementia, alongside learning the craft of campaigning and the reasons why people become involved with the group. It will also describe the benefits of membership as well as the personal cost that comes with the work that is demanded of the members. This work includes meetings with government ministers, being involved in the training of professionals, speaking at conferences, campaigning on issues of both medical and social nature in order to improve services for people with dementia, producing DVDs and contributing to information-giving materials, being involved in groups working to reduce stigma and prejudice, raising awareness of dementia, membership of key strategic groups influencing the Scottish Dementia Strategy and being involved in the monitoring and implementation of this new Strategy

The group has had major achievements to date which include the influencing of government priorities in Scotland in areas such as early diagnosis and improving care of people with dementia in general hospitals. Members have appeared on television, radio and national and local press to have their voices heard and were invited to write a foreword to the Scottish Dementia Strategy. They wrote this:

“We all have it within our power to effect the changes needed to ensure the best quality services for people with dementia, their carers and families across Scotland. Together we can make the Strategy work!”

The presentation will conclude with looking at the possibility of having a good life despite the diagnosis of dementia.

P1.2. Incongruity of perspectives: Self-expression of persons with dementia and family caregivers

Milena von Kutzleben, Wolfgang Schmid, Margareta Halek, Bernhard Holle, Sabine Bartholomeyczik

Background and Objectives: Most persons with dementia (PWD) living at home are staying together with their spouse or family and are cared for by them. Informal family caregivers do not only represent the most important source of manpower in home care, they are furthermore a frequently consulted target group in research. They serve as proxies regarding the situation of the PWD and they are interviewed with regard to their own subjective experiences in caregiving. Recently, the dyadic perspective in home-based care arrangements became a relevant topic in dementia research. The objective of this paper is to analyze a sample of studies from a previously conducted review (1) with regard to the congruity between self-expressions of PWD and their spouses or family caregivers.

Methods: In order to gain insight into the subjective needs and demands of community-dwelling PWD we conducted a systematic review of review studies on self expressions of PWD in scientific studies. The reviews were analyzed using the software tool MAXQDA 10 to perform a computer based thematic analysis.

Results: We included six review studies in our sample (2-7) - none to be found from Germany -, of which four (2, 4-6) revealed evidence of an incongruity in perspectives between self-expression of PWD and the spouse respectively the family caregiver. Awareness of memory problems and the evaluation of relationships (in particular agreement over marital quality, sexuality and tension) appeared to be central themes of incongruity. Overall PWD tended to evaluate the situation more positive than their partner or family caregiver. Furthermore, outcome measures of care and relevant domains of quality of life were areas where PWD and their informal carers set different priorities.

Discussion and Conclusion: Besides the difference in external and internal experience of being affected by dementia, there seems to be an incongruity regarding the impact of dementia on relationships and the needs and demands of PWD. The comparatively positive attitude of PWD might contain valuable resources to cope with the disease, but also to establish tailor made interventions for this user group with regard to their subjective needs and demands. In order to better understand their perspectives, subjective needs, demands and expectations as well as the dynamics between all parties affected, we recommend further research directly involving the PWD.


1. von Kutzleben M, Schmid W, Halek M, Holle B, Bartholomeyczik S. Community-dwelling persons with dementia: What do they need? What do they demand? What do they do? A systematic review of reviews on the subjective experiences of persons with dementia. Aging & Mental Health. 2011;accepted.

2. Ablitt A, Jones GV, Muers J. Living with dementia: a systematic review of the influence of relationship factors. Aging & Mental Health. 2009 Jul;13(4):497-511.

3. Beattie A, Daker-White G, Gilliard J, Means R. Younger people in dementia care: a review of service needs, service provision and models of good practice. Aging & Mental Health. 2002 Aug;6(3):205-12.

4. Braun M, Scholz U, Bailey B, Perren S, Hornung R, Martin M. Dementia caregiving in spousal relationships: a dyadic perspective. Aging & Mental Health. 2009 May;13(3):426-36.

5. de Boer ME, Hertogh CM, Droes RM, Riphagen, II, Jonker C, Eefsting JA. Suffering from dementia - the patient's perspective: a review of the literature. International Psychogeriatrics. 2007 Dec;19(6):1021-39.

6. Steeman E, de Casterle BD, Godderis J, Grypdonck M. Living with early-stage dementia: a review of qualitative studies. Journal of Advanced Nursing. 2006 Jun;54(6):722-38.

7. van der Roest HG, Meiland FJ, Maroccini R, Comijs HC, Jonker C, Droes RM. Subjective needs of people with dementia: a review of the literature. International Psychogeriatrics. 2007 Jun;19(3):559-92.

P1.3. Young people with dementia

Judith Mollard, Lucie Bordeau

Context: The number of young people with dementia in France is unclear because statistical data are almost non-existent.

Only an estimation is possible from the data collected by other European countries, which would recognise approximately 32,000 patients of less than 65 years in France (Report of OPEPS, in 2005).

Alzheimer's disease, which mainly affects persons over 75 years old is considered as a "disease of old people": Young people with dementia are rejected by our society and, today, their particular needs are not studied.

If the young people with dementia are a minority and thus often forgotten in speeches about the disease, they nevertheless know particularly painful situations.

Specific problems exist connected to the difficulty of the diagnosis, to access to care, to the impact of the disease on professional, family, social and financial life, to the absence of a legal framework, etc.

On the other hand, these patients have a more physical and mental energy than their older counterparts.

Their personal experience and perception of the disease are also completely specific.

In view of such reports and situations encountered by our local associations, France Alzheimer reflected, for several years, on the topic of young people with dementia in order to define actions. This work is carried out in collaboration with young people with dementia who wish to modify the representations and come up with new answers.

Objectives of the study:

  • Explore the perceptions and experience of young people with dementia and identify their needs
  • Identify the actions led by France Alzheimer associations and also the needs of young people with dementia
  • Analyse and address the needs of young people with dementia and provide an overview of the projects and the needs of associations
  • Define actions in order to answer to the expressed needs


Phase 1: a study with the associations of the network (in March, 2011)

This first phase will involve sending on-line questionnaires to 106 associations of the network France Alzheimer in order to:

  • find out the requests made by people of less than 65 years and/or their family to the local associations,
  • List the actions organised by associations for people of less than 65 years and\or their family,
  • Identify the difficulties encountered by associations in responding to this specific public

Phase 2: study the life quality* and the needs of the young people with dementia of less than 65 years living at home (in May and June, 2011)

This phase 2 consists in:

  • Lead conversations (20) (face-to-face interviews) without a member of the family in order to collect elements on:
  1. The perception and the experience of the disease (future, relationships),
  2. The strategies organised to face the situation
  3. The quality of the family and social environment
  • Complete this first conversation with the person with dementia with a conversation with his/her family carer.

*The concept of life quality is based on "the main perception of his/her life, in the context of the culture and the value system in which he/she lives, in connection with his/her objectives, his/her expectations, his/her standards and his/her anxieties " (WHO, 1993). The perception which a person has of his/her well-being remains subjective and must be completed by more objective data.

Phase 3: from the results of phase 1 and 2 (in July and August, 2011)

  • Define and develop actions for the young people with dementia.
  • Write a reference document on the experience and needs of the people with dementia of less than 65 years.

P1.4. Supporting safe walking for people with dementia: User participation in the development of new technology

Louise McCabe, Anthea Innes

Assistive technology is increasingly used to support people with dementia and can offer innovative and flexible options for increasing quality of life. One area of research and practice innovation that attracts much debate is the use of GPS systems to locate people with dementia. Such systems can help to promote independence for people with dementia and reduce stress and anxiety for them and their carers. Supporting safe walking for people with dementia can reduce isolation by enabling participation in everyday activities outwith the home. However, there are also concerns about the ethical issues raised by the use of such devices for tracking and locating individuals. This paper presents the views of 12 people with dementia, three caregivers and five other older service users about assistive technology devices that would promote safe walking. Two focus groups were conducted, one in Scotland and one in England as part of a wider study (reported elsewhere). Two researchers facilitated each group with field notes taken. Audio recordings of each focus group were fully transcribed. Data were analysed using a qualitative, thematic approach. People with dementia commented favourably on the possibilities for increased safety and confidence offered by a GPS device. Walking and ‘getting out and about’ were common activities for many of the participants and they reported that a GPS device would support them to continue to go out independently with more confidence or as their dementia progressed. They had few concerns about the ethical issues relating to the device being seen as a way of ‘tagging’ individuals but did recommend that such as device be discrete and not exacerbate stigma that might be experienced by the individual. Participants offered a wide range of ideas and opinions on the design of the device including ideas about colour, style, battery life and wearability. Participants also shared their views on how the device might be used in practice. GPS devices which support safe walking for people with dementia are considered useful by older people, people with dementia and family caregivers to support independence and increase self confidence. Potential users of the device appear less concerned with the ethical issues relating to ‘tagging’ than those writing in academic journals and the media although they are interested in how the device might be used to promote independence and reduce isolation rather than just as a safety precaution offering caregivers peace of mind.

This abstract presents independent research commissioned by the National Institute for Health Research (NIHR) under the Invention for Innovation Programme (i4i). The views expressed in this abstract are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.

P1.5. Active Folkhighschool for people with dementia

Anne Arndal, Nis Peter Nissen

Some years ago, a group of people with dementia and their relatives, who were all in contact with an “advice centre for people with dementia” in Denmark, formed a forum which they called: “Think-tank”, thus stressing that although you are diagnosed with dementia you can still think and get new ideas.

It was at such a meeting that the idea about “Active Folkhighschool” was born. The participants would like to go to a course at a Folkighschool. But they realized that the course had to be designed for people with dementia with a special focus on different kinds of physical activities and with less focus on intellectual matters.

The Alzheimer association found the idea interesting, both at the local level and centrally. So it was decided to try to realize the plan.

To explain what a Danish “Folkhighschool” is, it is necessary to tell you a little about how the Folkhighschool movement started many years ago, and a little about what Folkhighschool stands for today for ordinary people in Denmark.

To be able to participate in the stay at the Folkighschool you should be in a phase of the disease where you need only a little help to cope with “activities of daily living”. To support the participants, 3 – 4 paid helpers with knowledge of dementia and 3 – 4 volunteers were recruited.

Participants were recruited from all over the country for the first course and for the next two from two of Denmark’s 5 regions. Recruiting was done by asking volunteers from the local Alzheimer association and professionals if they knew someone who would eventually benefit from a course and would like to go.

The course lasts 5 days. The subjects have been (amongst others): Exercise, Zumba-dancing, Gospel choir, going for outdoor walks, outings to interesting places around the Folkhighschool, aquarelle painting and lectures about famous Danish songwriters. The ordinary teachers at the Folkhighschool were responsible for the content, using the same classrooms and workshops as every other user of the school. People without dementia were attending other courses at the school at the same time, and the participants joined the ordinary “morning session” where songs from “the Folkhighschool songbook” are sung.

We would like to quote some of the statements from participants, from the professionals and from relatives.

A DVD was made at the second course and a lot of pictures taken. We would like to show some of these and will also tell you about the experiences of the relatives.

The press was interested and we will bring some quotes.

We will share some of the reactions to the courses after the participants went back home.



Last Updated: Wednesday 26 October 2011


  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the following sponsors: Fondation Médéric Alzheimer, Fondation Roi Baudouin, Janssen, Lilly, Pfizer, Sanofi and SCA Global Hygiene
  • Fondation Médéric Alzheimer
  • King Baudouin Foundation
  • SCA Global Hygiene