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P8. Supporting people with dementia and their carers

Detailed Programme, abstracts and presentations

P8.1. Friends and families – families and friends

Victoria Cowap, John Butler

With the support of the Mental Health Foundation, we have completed a two-year project to develop a positive model of relative involvement in the lives of residents with dementia who live in care homes. The project has enabled relatives to continue to play a key role in the life of their loved one ‘because’ and not ‘in spite’ of living in residential care.

Project aims:

  • Improve quality of care, quality of life and general well-being of residents in project homes
  • Improved awareness and understanding of dementia for relatives
  • Positive engagement of relatives in the lives of their loved ones in residential care
  • Improved links with project homes and the wider community
  • Develop a resource pack of positive relatives involvement and support that can be rolled out more widely within the social care community

We are delighted that the 12 minute DVD and accompanying resource pack is available and we would welcome the opportunity of sharing this with colleagues attending this year’s conference.

The moving and powerful DVD features two carers who share their story - this includes information about the life of their loved one, talking about their feelings of guilt when it was necessary to make the heart breaking decision to admit their relative into residential care and how the project has helped and supported them. The resource pack provides information about how the project may be developed in other care homes including examples of the sessions that have been held.

P8.2. Tom’s Club: information and activities for people with dementia and their carers

Julia Botsford, Kaye Efstathiou, Barbara Fitzpatrick

This presentation will describe a successful and innovative approach to providing therapeutic support, information and social contact for people with dementia and their family carers. It will present a rationale for the approaches used; discuss how benefits have been measured and evaluated; and explain how participants have contributed to the shaping and development of the Club.

Tom’s Club

Despite increasing numbers of people with dementia and a growing need for therapeutic and support services, many dementia services are now being threatened or cut as a result of the current economic climate. This means that although local services are rising to the challenge of promoting early diagnosis, capacity for post diagnostic provision may be stretched. In addition to the need for support for people with dementia, there is a pressing need to find creative ways to address the needs of family carers.

The Admiral Nurse Service provides individual and group support in varied ways including through Tom’s Club. This was set up in 2009 and has since proved very popular with both carers and people with dementia, and has been a means by which to provide support to increasing numbers of people who might otherwise be unable or unwilling to engage with mainstream services.

Unlike many other services for carers, Tom’s Club explicitly offers the choice to spend time with or without the person being cared for. Increasing numbers of carers attending Tom’s Club are, in fact, choosing to bring along the person with dementia and enjoy social contact alongside therapeutic support.

Tom’s Club is more than a dementia cafe in that in addition to the social and informative elements it also offers a structured activity group specifically for people with dementia to enjoy, if they wish, while the main information session is taking place. This parallel session for people with dementia was developed through joint working between occupational therapy and admiral nursing, and incorporates the principles and structure of Cognitive Stimulation Therapy, and approach which has been found to provide significant benefits.

Spector A, Thorgrimsen L, Woods B, Royan L, Davies S, Butterworth M, Orrell M: A randomised controlled trail investigating the effectiveness of an evidence based cognitive stimulation therapy programme for people with dementia. British Journal of Psychiatry 2003, 183:248-254.

P8.3. Difficult Conversations: the role of mediation in assisting people with dementia and their families

Eleanor Edmond, Michele Lee, Avril Dooley

In 2009, the Alzheimer Society of Ireland and Mediation Northside (a community mediation service) set up an elder mediation service for families in conflict over the care of an older person living with dementia. The aim was to offer family members, including the older person with dementia, a means of decision-making and conflict resolution that minimises stress and promotes communication and understanding. Mediation has been described as “the art of helping people have difficult conversations” and the Alzheimer Society’s experience indicated this would be a service of use to many families living with dementia.

The elder mediation service was launched as a one-year pilot project in June 2009. It received its first referral in August 2009 and continued working on cases until August 2010. An external evaluation of the project took place during 2010 and a report is due to be published shortly (May 2011)

The pilot project was innovative and groundbreaking in offering elder mediation as a new service to older people and their families in Ireland. It was unique amongst elder mediation services both in its specific focus on families caring for an older person with dementia and its formal link with an advocacy service. The pilot project has had success in demonstrating the benefits of elder mediation as an approach to helping family members reach agreement on issues and creating positive change in relationships. The project’s achievements are even more impressive given that it was set up with no external funding

The pilot project highlighted

  • the complex dynamics of family conflict, its impact on the care and quality of life of a person with dementia, and the challenges it poses for mediation;
  • The ethical questions around mediation in the context of care planning and the involvement or lack of involvement of the person with dementia;
  • Challenges and opportunities for mediators in involving the person with dementia, through the use of advocacy or other innovative means;
  • The benefits of partnership between diverse organizations to develop innovative services;
  • Issues around sustainability and the most appropriate model to meet the needs of people with dementia and their families.

P8.4. Out-of-pocket costs of dementia care: a high price for the families

Michèle Micas, Imad Taalab

Enabling a person with Alzheimer’s disease to live at home is far from leaving the incumbent informal carer free from a financial and physical burden! These are the findings of a socio-economic study carried out by France Alzheimer between September 2099 and November 2010 involving close to 500 carers. This study was carried out in two ways: individual interviews with 88 carers in 5 departments, and an on-line survey with the participation of 378 carers. ‘Above all, our goal was to collect acurate and credible data to highlight a worrying situation where economic difficulties and the burden of the informal carers of people with dementia are combined. From a financial perspective, France Alzheimer wanted to evaluate the specific out-of-pocket costs incumbent to the carer and the person being cared for after considering the range of goods and services used, the support received and the activities performed by the informal carer’, explained Marie-Odile Desana, President of France Alzheimer.


  1. The out-of-pocket costs are on average around € 1,000 per month, although this amount can vary by a factor of one to four depending on whether the patient is living at home (€ 570) or in a care home (€ 2,300).
  2. The main costs mentioned by the interviewees are: costs linked to the home help, day care or temporary care; costs linked to incontinence; those linked to keeping the house clean; transport; home modificationsand night carers. These costs are to be put in perspective with the French pension levels (€ 1,100) and with the average co-payments received by the families (€ 411 per month). This is, in short, well below the families' real needs, regrets Marie-Odile Desana. As a matter of fact, the people with the disease can only benefit from the ‘allocation de perte d’autonomie’ – APA (personal help benefit linked to the loss of autonomy), and there is no specific and tailored support for the people suffering from this degenerative disease.
  3. The informal carers' daily activity spans on average 6 ½ hours (for some of them, it is 24 hours a day). This does not take into account the time when the carer is looking after the person with dementia and cannot go out or reduce their attention.
  4. The financial value given to this time is estimated to be € 3,000 per month (based on the gross salary of a home care professional at € 16 an hour).

The cost of human care, be it performed by professionals such as home helps or by informal carers, is by far the heaviest and reflects one of the consequences of the very specifc needs linked to care for people with Alzheimer’s disease or another form of dementia, says France Alzheimer’s President. These data emphasise, even if it was not necessary, the importance and the scope of the debate started in France on the reform of dependance. In this respect, France Alzheimer reinforces the organisation’s legitimate positions: a decrease in the out-of-pocket costs incumbent to the family, funding by reforming national solidarity measures notably by an increase of the CSG (General Social Contribution), no taxation of the estate of dependent persons, creation of a universal right to autonomy support, a personalised support plan for all.

In France, over 800,000 people have Alzheimer’s disease and only one in two has been diagnosed.

P8.5. Is peer support an answer to social isolation?

Katie Daniel, Jane Tooke, Linda Sheldrake

Introduction: In response to the 2009 National Dementia Strategy (England), which highlighted the need for peer support for people with dementia and carers to reduce social isolation, the Alzheimer's Society successfully negotiated for 14 Peer Support demonstrator sites. This evaluation aimed to investigate service user’s perception of some of these services.

Method: Three pilot sites were purposively selected; to reflect diversity in the demography, geography and the model delivered. There were multiple methods for data collection. Initial baseline demographic data was collected upon access to the service. A survey and focus groups of clients attending established groups within each site were undertaken to collect service user perceptions of the service. The questionnaire for the survey was written, and data managed and analysed through the SNAP software program. Client data was analysed for frequencies across all three sites. Free text data was thematically analysed.

Results: The total number of clients participating in the evaluation was 113, the majority of whom were people with dementia (71%). A third of people with dementia in two regions were living alone and most clients had heard about the service from Alzheimer's Society staff members or other services. The overall response rate to the survey was 64%. Most respondents reported being assisted in attending the peer support groups by a carer. Most respondents (60%) felt positive that the groups had helped them to maintain friendships. However a number were either ‘not sure’ (17%) or felt negatively about this (10%). Focus group participants reported the groups reduced their sense of social isolation by 1) having fun and friendly social contact and 2) contact with people in a similar situation. One service user reported finding the groups a ‘big help’ but did not want to ‘bond’ with the group.

Discussion: This data suggests that Peer Support is reaching those who are living alone and who may be most at risk of social isolation; however route of referral suggests more needs to be done to reach those people who are outside the current sphere of the Society. Results highlight the important role carers play in facilitating access to the groups. Most service users reported that the services were effective in reducing a sense of isolation, however a small number of responses were neutral or negative and some persons with dementia were ‘not sure’ whether they enjoyed talking to other people with dementia. This may reflect the difficulty some service users face looking into the perceived ‘future’ of their dementia journey. Although reduction of social isolation was an important outcome for most participants for some service users experiential learning and coping strategies are important outcomes of Peer Support.



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