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Parallel Session P15 - Supporting and involving people with dementia (2)

Detailed Programme and abstracts

Saturday, 2 October – 14.00-15.30 (Yellow Room)

P15.1. The Influence of Consumer Involvement on Dementia Research: A Case Study of the UK Alzheimer’s Society

David L W Buglar, Social Science Research Unit, University of London, Woburn Square, London, WC1H 0NR, UK,

Consumer/user involvement in research grant programmes is becoming more widespread in European voluntary organizations and research councils and it is an explicit policy of UK NHS research and development programmes; however, there has been very little research into the benefits or impacts of involvement.

The term consumer/user is open to interpretation. Concepts such as ‘lay’, ‘public’ and ‘community’ may seem clear, but their meanings are, in fact, elusive (DeMaio, 1993). Consumers have been defined variously as: ‘Those without professional expertise on an abstract body of knowledge that can be applied in the health care field’ (Friedson, 1970); and ‘People whose primary interest in health-care is their own health or those of their family, as past, current and potential patients…’ (Oliver et al, 2001).

The Alzheimer’s Society funds research with the help of consumers, which it defines as: ‘people with dementia, and their (non-professional) carers or former carers’.

The Alzheimer’s Society has run its Quality Research in Dementia Consumer Network since 2001.

Members of the network set research priorities, score grant proposals, take part in grant review panels and act as monitors on funded projects. The network is considered an example of best practice in the field, yet it has not been evaluated formally until now.

The presenter has been evaluating the system since 2007 and is currently writing up his findings as a PhD thesis.

This paper will discuss the evaluation project, summarizing the research questions, methods and ethical considerations, before detailing a selection of the key findings which the presenter considers relevant not only to the Alzheimer’s Society, but any research organization seeking to involve consumers/users in their work.

P15.2. People with dementia – part of the community

Sabine Jansen1, Ute Hauser2, Saskia Weiß3, Helga Schneider-Schelte

1 Deutsche Alzheimer Gesellschaft e.V. Selbsthilfe Demenz, Germany,

2 Deutsche Alzheimer Gesellschaft e.V. Selbsthilfe Demenz, Germany,

3 Deutsche Alzheimer Gesellschaft e.V. Selbsthilfe Demenz, Germany,

The number of people with dementia is increasing because people getting older. Also the number of people with dementia living alone increases in Germany and other European Countries. In Germany already 60 % of people over 80 are living in single households. Support facilities are in many cases not available or not useful for people with dementia who live alone.

The German Alzheimer Association therefore started a project in 2007 that focuses to people with dementia living alone. First interviews were made to get more knowledge about their wishes and needs. In a second step education materials for different target groups (policemen, bank employees, salespersons, people in the neighbourhood) were developed to inform people in municipalities and make them more sensitive for people with dementia. The education materials were tested in different regions and now are available in a manual. The presentation will show results of the interviews and give an overview about the educational materials and their implementation.

P15.3. Supporting persons with dementia through peer group discussions

Sirkkaliisa Heimonen1, Elisa Virkola2

1 Age Institute, Asemapäällikönkatu 7, 00520 Helsinki, Finland,

2 Age Institute, Asemapäällikönkatu 7, 00520 Helsinki, Finland,

Sharing experiences with others is generally empowering but especially in difficult life situations. Having an illness is a situation in which persons have a need to share their thoughts and have peer support. Persons with dementia often lack possibilities to discuss with others who share the same life-situation.

The Age Institute has been leading a project ‘Seniors in the City’ (2008-2010) where the aim is to develop a method for evaluating an elderly person’s situation on a holistic basis and to plan individually tailored support. The project is focused on the situation of persons with dementia at early stages.

In this project one method of supporting persons with dementia was regular discussion group meetings. This group process was built on lifespan point of view and enhancing resources. The process contained eight meetings, which took place every third week. Five women (aged 75 – 87) living alone in the centre of Helsinki took part in the meetings. In these meetings memories of different life phases, attitudes towards disease, coping strategies, ways to adapt to the situation and individual resources were shared. The women had many ways of coping with their situation and their attitudes were quite positive although they were well aware of the effects of the disease in everyday life and the possible challenges in the future. The need to be independent and, at the same time, the slow process of giving up independence seemed to be a common theme among persons with dementia at early stages.

On the basis of this process it seems that it would be very useful to arrange peer discussion groups, because persons with dementia in the early stages often have difficulties in telling their stories to other people. However, they have an evident need to share their experiences and thoughts concerning the illness and its effects on everyday life and to have emotional support in their challenging situations.

P15.4. Neuropsychiatric symptoms and Quality of Life in patients with very mild and mild Alzheimer`s disease

Kristiina Karttunen1, Tuula Pirttilä2, Hilkka Soininen3, Pertti Karppi, Asta Hiltunen and Tarja Välimäki, et al for the ALSOVA study group

1 Institute of Public Health and Clinical Nutrition, Department of Geriatrics, University of Eastern Finland, Kuopio, Finland. E-mail:

2,3 Department of Neurology, Kuopio University Hospital and School of Medicine, Institute of Clinical Medicine, Neurology, University of Eastern Finland, Kuopio, Finland. E-mail:

Background: Neuropsychiatric symptoms (NPS) are common manifestations of Alzheimer`s disease (AD).

Objective: To examine the prevalence and significance of neuropsychiatric symptoms in very mild and mild AD patients with emphasis on their influence on the well-being of the patients and their caregivers.

Methods: The participants were 240 patient-caregiver dyads who participated in a prospective, controlled rehabilitation study (ALSOVA). Three Quality of Life (QoL) instruments were used; generic 15D, disease-spesific QoL-AD and Visual Analog Scale (VAS). The disease-spesific QoL-AD was both self-rated and caregiver rated. Other scales used were Mini-Mental State Examination (MMSE), Clinical Dementia rating (CDR), ADCS-ADL, Neuropsychiatric Inventory (NPI) and Beck Depression Inventory (BDI).

Results: Neuropsychiatric symptoms were present in 76.5% of patients with very mild AD (CDR 0.5) and in 84.9% of patients with mild to moderate AD (CDR 1). The most frequent symptoms were apathy, depression, irritability and agitation. The strongest predictor of self-reported QoL-AD scores was depressive symptoms whereas functional decline and presence of NPS predicted poor caregiver ratings of patients` QoL. However, caregiver depression also influenced significantly their ratings.

Conclusion: NPS are common even in the early stages of AD. NPS were significantly associated with caregiver assessment of the patient`s QoL but not with patients` self-assessed QoL. Depression decreases QoL, but may remain unrecognized in AD patients, emphasizing the need for careful and structured assessment of NPS before deciding on the appropriate treatment.



Last Updated: Wednesday 03 November 2010