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P11. Preventing isolation and loneliness

Detailed Programme, abstracts and presentations

P11.1. Shared-housing arrangements in Germany – an approach to avoid loneliness in dementia care?

Johannes Gräske, Karin Wolf-Ostermann

Background: In accordance with the trend of deinstitutionalization, traditional, large-scale nursing homes are being partly transformed into or replaced with new small, homelike facilities. In Germany, shared-housing arrangements (SHA) are a new approach in dementia care. Situated predominantly in large apartments in mostly urban settings, these arrangements are served by community care services and are completely disconnected from traditional residential facilities. 6-8 residents live together in these facilities and form a household together with staff members. Normal, daily living is emphasized, in which residents are encouraged to participate in household tasks. Attention is also paid to normal social participation. Although the number of SHAs has increased rapidly in the last years, implications and effects on residents, their family and professional caregivers remain unknown. Insight into these features is essential to improve care for older people with dementia and to contribute to future planning and realization of dementia care.

Objectives: In our study, we surveyed the participation of residents and their family members in household tasks and normal social life and the impact on residents´ outcomes.

Methods: Using a cross-sectional design we surveyed residents, their family members as well as employees of community health care providers in summer 2010. We assessed participation in household tasks, in meaningful activities and social participation in general. To evaluate the impact on residents´ health-related outcomes, we measured amongst others residents´ quality of life (QUALIDEM), need-based behavior (Cohen Mansfield Agitation Inventory) and apathy (Apathy Evaluation Scale).

Results: In our survey, we could include 36 SHA in Berlin with a total number of 261 residents. 104 residents or their legal representatives signed the informed consent and participated in the study. The mean age of the residents was 79.0 years and they were mostly female (73.0%). The participants are predominantly with dementia (83.7%). At the time of data collection participants lived in the SHA on average for almost 3 years. Social Participation is present in these care arrangements. For example, about two third of the residents go out regularly for a walk in the neighborhood. Additionally, about 40% of the residents have visits from friends and family members of most residents participate regularly in (household) activities in the SHA. Our results suggest that these activities improve the residents´ QoL, and reduce need-driven behaviour as well as apathy.

Conclusion: SHA are an approach to improve the social participation of persons with dementia and their family members. However, our findings indicate that participation is not as high as envisaged. Further research is needed to evaluate the satisfaction of residents and their family members with this approach to avoid loneliness.

P11.2. Solidarity in friendship: The role of friends in preventing isolation and loneliness among persons living with dementia

Susan H. McFadden, John T. McFadden

Persons living with dementia (those diagnosed and those giving care) often report that friendship ties weaken as symptoms progress and friends make fewer efforts to remain in contact. Research by the first author (a psychologist) involving interviews with persons at several points along the dementia spectrum showed they value friendships, experience distress over feeling abandoned by friends, and in the later stages, define friendship in terms of time spent doing things together. Persons living in a memory care residence described friendship as “all or nothing”: either a person is a friend or is not a friend. Professional practice of the second author (pastor, chaplain) confirmed these observations and revealed the way the work of theologian, Miroslav Volf, applies to friendship with persons who have memory loss and their carers. After a review of the first author’s research on friendship with persons living with dementia, this paper applies Volf’s idea of the “four acts” of the “drama of embrace” to suggest how people can be educated to remain in friendship even as one person journeys into progressive forgetfulness. Working from a model of relational spirituality, Volf states that embrace of the friend involves (1) opening the arms to the other (inviting connection), (2) waiting (respecting the need for the other to choose to be in relationship), (3) closing the arms (mutual enjoyment of the connection), and (4) opening the arms again (respecting the autonomy of the friend while also affirming that friendship involves meaningful relationship between vulnerable, interdependent persons). The paper concludes with suggestions about how community organizations—particularly faith communities—can offer education and support for the increasing number of persons who will have at least one friend with memory loss.

P11.3. Preventing isolation and loneliness of people with dementia and their carers

Teresa Straczynska

This presentation will set out the role of the Dementia Advisor in preventing isolation and loneliness of people with dementia and their carers.

Alzheimer Scotland believes that no-one should go through the illness alone. In November 2009 Alzheimer Scotland introduced a new role that of Dementia Advisor. The role of the Dementia Advisor is to:

  • be the local point of contact for people with dementia and their carers from diagnosis to end of life. The Dementia Advisor is able to signpost people to organisations whether statutory, voluntary or community in order to be able to support the family to receive appropriate care, to maintain their networks and to continue with activities in the community.
  • provide support to local communities to help them become more dementia friendly and increase opportunities for people with dementia and their families to participate in community life. Through presentations about dementia to community based groups make them aware of how they can support people with dementia and their carers in order that they can continue with their normal daily lives and activities.
  • provide information to help people with dementia and their carers to plan ahead – particularly in relation to money and legal matters and plans for future welfare.
  • empower people with dementia and their carers to access the information they need, promoting independence, self-help, well-being , choice and control.

As people are living longer, the numbers of people with dementia will increase. With the expansion of the European Union and the continuous movement of people there will be pockets of minority ethnic older people in most countries throughout the European Union. There is a need to look at how we work with older minority ethnic groups, the issues faced by these people and the issues faced by service providers in these countries.

As part of the presentation I would like to look at the support needed by people from ethnic minorities based on my background whilst working for the Polish and Ukrainian support service for 10 years.

Isolation and loneliness are an even greater problem for people in ethnic minorities.

A newly acquired language is one of the first areas which is lost by a person with dementia even if that person has lived in the country for many years. This means that communication becomes difficult not only with professionals but possibly also with immediate family.

There is still a great deal of stigma attached to dementia but in certain cultures it is even greater, especially where an older person is regarded as the wise person and therefore able to resolve all problems.

Cultural differences can make it difficult to access support and services.

P11.4. The effect of accompanied holidays for the Alzheimer patients and their carers on the installation of a social network at home

Johanna Kossmann, Kristina Kossmann

Summary: The project as a model - “Specially planned accompanied holidays for the Alzheimer patients and their close relatives including specially adapted educational, relaxation and therapeutic courses” – shows what sort of services are on offer and how a network can be created to offer assistance to the patients and their families and show how an adequate standard can be maintained for the patient at home.

The participants are mostly in a similar situation with similar ailments and often from the same town. Further, with this support it is possible for other members of the family to find time, to relax and/ or for example pursue hobbies. Here is a possibility for “carers” to find their own “centre” which was lost in the daily help given to a loved-one”.

The Alzheimer Gesellschaft Dortmund e. V. has offered the benefit of this recreational project to its members for the past 10 years. This holiday proves to be a good opportunity for both patient and caring relatives to meet kindred spirits and refuel their batteries for everyday life.

It starts when the whole group meets in Dortmund and after a joint 1.5 hour drive by bus reaches the little spa town Bad Rothenfelde. In the bus, the staff members are introduced to “their” patients. Most have been with us for years and are well-known members of the group.

A well structured daily plan is most important for people with dementia – and while on holiday even more so. There is no room for hectic routines and a “well known face” is of great importance. We establish a responsible team-member for each patient to be recognised and accepted as their contact person so the carer can have his or her free time and relax. After the first few reluctant days this is greatly appreciated and welcome. An established night-watch shift by the staff limits the concerns of the carers even more.

Routine is established by regular collective meals and the establishment of daily activities like walking in the park, water gymnastics and massage, a visit to the adjoining spa town with the salines and rosary, a swim in the hotel-owned pool or card and board games on rainy days or after 8 o'clock in the evening. Highlights are weekend excursions to the zoo, a boat trip on a nearby river and the Sunday dance at the Sanatorium ball. We try to include all members of the group in the activities according to their abilities.

Also during the „holiday project“ special tailor-made courses are given (with a high trainer/ student ratio e.g. 1:2) to reduce the misgivings the mostly elderly carers have for modern equipment and to learn and train new skills intensively to use modern networks technology to communicate.

Once a start has been made, the carers put it to good use when back home. Photographs can be exchanged, e-mails can be written, meetings can be arranged to play cards, just for a cup of coffee or perhaps to have a barbecue in the garden. These get-togethers happen quite regularly - a good foundation has been laid to banish isolation and loneliness. Naturally, when hard times are experienced a few comforting words on the telephone, an e-mail or a short visit from an acquaintance can mean an awful lot!

A further advantage is that a carer can see how well an Alzheimer patient takes to being assisted. This breaks down barriers for future situations when care may need to be sought! When the patient is at home he or she will more readily accept help from “outside”– bringing a most welcome benefit for the patient and family unit.

These are only a few examples of how “social networking” triggered by the holiday contacts can become a decided advantage for the family.

If the family unit is happy – then the patient feels well too!

P11.5. An innovative approach of art therapy: from social support to integration into society

Philippe Migliasso, Federico Palermiti, Muriel Garaccio, Kate Williams, Alain Pesce

Day care centres have an increasing role to play in health care solutions for people with dementia. Non-pharmacological interventions are implemented both in treatment and prevention. Art therapy is often used for occupational rather than creative ends, in an instructive and structured atmosphere, which leaves limited place for creativity. Due to dementia, patients lose their place in society and their presence as a person slowly fades away as the illness progresses. An innovative experiment of pictorial creation, carried out by the patients at our therapeutic Day Centre, enabled us to exploit spontaneous creativity and a positive way to reintegrate patients into Society.

The Sperenza – Albert II Day Care Centre accommodates for 20 people with Alzheimer’s disease, offering interdisciplinary care each day. Individualised projects are proposed based on three main objectives: maintain a strong social link, stimulate physical activity and promote social intervention.

Both art and the patient's place within society are at the heart of these activities.

The objective of this project was to go beyond words to express creativity and emotion, organising art therapy workshops without the usual structured atmosphere. A nurse and a carer, trained in pictorial technique, took 40 patients over a period of 4 weeks. They provided patients with technical advice but left them to express themselves spontaneously. Before the work sessions started, the subjects were prepared with a short explanation, dialogue and environmental interventions (background music, atmosphere, etc…). After this phase, the patients were asked to express themselves freely using the materials and colours at their disposition. Tools, which didn’t require a particular technique, were also used (rulers, brushes sponges...). The paintings were done collectively (10) or individually (10). The paintings produced where then treated as pieces of art: framing, organisation of an exhibition at the Maison de l’Amérique Latine in Monaco, a reputed gallery open to the public (who were asked to give their opinions in a gold book), brochure to present the paintings, a private inauguration for the families, press release, commentary by an art expert and an auction. The profits from this auction were used to improve the comfort of the patients at the Centre.

The originality of our project lies in 2 fundamental elements: 1.Offering a place for free expression enabling the patient to liberate their capacities of communication, of conscience and of creation. 2. Valorising and promoting the patients’ artistic creations and treating their paintings as any other artwork exhibition.

The result was positive in terms of satisfaction of the patients and their families and the appreciation of the frequent gallery visitors.

This new liberated and creative approach, which sways away from habitual routines and goes above and beyond the walls of the Day Care Centre, seems to have had an impact on the way people see patients with Alzheimer's diseases. This experiment also leads us to believe that the creative abilities of an Alzheimer's patient are still in tact, perhaps even more accessible, due to fewer inhibitions and a change in environment. Artistic expression might therefore be a means of communication, which enables us to understand the patient and rise above his disability.



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