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Parallel Session: Involving people with dementia

Abstracts and presentations

“Listening Well”: Ensuring effective involvement of people with dementia in the development of government strategy

Elizabeth Byrne McCullough, Alzheimer’s Society, United Kingdom,

The Alzheimer’s Society in Northern Ireland is undertaking a piece of work to ensure the authentic involvement of people with dementia in the development of a dementia strategy for Northern Ireland, which is currently underway. The dementia strategy will be based upon recommendations of the Bamford Review of Mental Health and Learning Disability; ‘Living Fuller Lives’ report and around identified themes. The Alzheimer’s Society is proposing to undertake, in association with the Mental Health Foundation, a piece of work entitled ‘Listening Well’, through which the views of people with dementia will be documented, analysed and fed into the development of the strategy to coincide with the stakeholder consultation.

Objective of ‘Listening Well’: In its original response to Bamford, the Alzheimer’s Society lamented the absence of people with dementia in the development process and identified it as a priority, when the NI Executive stated its intention to develop a dementia strategy for NI. The ‘listening Well’ process has been designed by the Alzheimer’s Society to support the engagement of people with dementia in the development of the strategy and to ensure that their views are documented and analysed to form a record of their participation.

Process: There are two strands to the process, the first of which involves commissioning qualitative mental health researchers (Mental Health Foundation) to undertake in-depth 1:1 interviews with 6 people with dementia, from as broad a spectrum as possible. Documentation and analysis of these interviews will be presented to the team, which is responsible for producing the draft strategy for stakeholder consultation.The second strand will involve a group listening event to include up to 20 people with dementia and carers, facilitated by Alzheimer’s Society and involving the research team. This event will explore expressed views on priorities contained in the draft strategy.

Outcome: Both strands will be written up by the Mental Health Foundation in association with the Alzheimer’s Society and will form an important record of the substance of these exchanges and the means by which the involvement of people with dementia in the development of the dementia strategy for Northern Ireland, has been secured.

Client-centred care for people with dementia

Angela van Baalen, Reinier van Arkel groep, Netherlands,
Co-authors: Ad Vingerhoets, Herman Sixma, Jacomine de Lange, Rose-Marie Dröes and Franka Meiland

Introduction: Many health care institutions in the Netherlands are currently undergoing a radical transformation by trying to be more responsive to patients’ needs and expectations about health care. These needs and expectations are becoming more and more important for the supply and organisation of health care. The emphasis in this so-called client centred approach is on the health care user’s perspective. In order to contribute to quality of life, health care providers should explore the underlying needs and expectations about quality of care while developing services. But people with dementia do not often spontaneously and explicitly express what they want or how they want their needs to be met. Based on a theoretical model, a methodology, in which the Camberwell Assessment of Needs for the Elderly (CANE) is combined with assessment of important quality indicators from the patient perspective, was designed in order to be a helpful instrument for professionals in enhancing client-centred care.

Objective: The present study aims to evaluate the effectiveness of this methodology.

Method: In a single-blind quasi-experimental trial, the hypothesis is tested that the intervention (professionals using the methodology), will improve (1) the client-centredness, the quality of life, and the quality of care as perceived by people with dementia living at home; (2) the client-centredness, the quality of life, and the quality of care as perceived by informal caregivers; and (3) the professional competencies to enhance client-centred care (primary outcomes). Professional caregivers (about 30) are randomly assigned to the experimental or control grop. Over a period of 3 months, professionals in the experimental group use the methodology in performing the care for their clients who agreed to take part in the study. Subjects in the control group where designated to the care as usual condition. Secondary outcomes measures are (1) the number of reported met and unmet needs by people with dementia; and (2) the self-perceived pressure by providing informal care, the sense of competence, and the number of reported met and unmet needs by informal caregivers.

Preliminary results: The study started in October 2008 and is expected to end around October 2009. Preliminary results will be expected in May 2009.

Participation of people with dementia in social and psychosocial research (MADERE Study)

Federico Palermiti, Fondation Médéric Alzheimer, France,
Co-author: Anne- Marie Duguet

In France, social and psychosocial research has no clear legal framework, whereas biomedical research benefits from rigorous legislation. However, these legal measures cannot be adapted or only poorly to the social and psychosocial research background. Beyond existing regulations concerning confidentiality and data protection or various deontological guidelines, an ethical approach seems to be necessary in order to frame social and psychosocial research, especially when it involves people with dementia.

The Fondation Médéric Alzheimer has decided to conduct a collaborative study with l’Association Française de Recherche et de Formation en Droit Médical on the comparison of the legal and ethical framework for social and psychosocial research in France, Canada and England. Therefore, diverse legal responses seem to rule the involvement of people with dementia and their legal protection. In this communication, we propose to present the results of this comparative study and some examples of innovative practices in those countries, specifically adapted to people with dementia. Thus, we will expose some possible guidelines that could be proposed to the French legal context as well as future perspectives in terms of implementation and dissemination.

Journeying through dementia: developing a self-management programme for people with dementia. A UK study

Claire Louise Craig, Sheffield Hallam University, United Kingdom,
Co-author: Gail Mountain

Self-management is an approach where individuals are provided with the necessary skills and tools to enable them to manage their disability and experience improved quality of life. The concept, first explored by Creer and colleagues in the 1960s and 1970s in the context of asthma care (Lorig & Holman, 2004) has led to the development of a range of programmes aimed at individuals with long-term conditions including arthritis, back pain, diabetes, HIV and depression. However whilst the concept of self-management is not new less has been written in relation to self-management in the context of people with dementia (Mountain, 2006).

This paper will describe the development of a self-management programme for people with dementia in the UK led by researchers at Sheffield Hallam University in collaboration with the Expert Patients Programme. The intervention ‘Journeying through dementia’ was created in partnership with people with dementia who were responsible for identifying the themes included in this menuled programme and the design of its method of delivery. The authors will describe the programme and share the insights they gained through engaging in this process and the themes identified by individuals as to the ‘real issues’ impacting on quality of life. Discussion will highlight the complexities of creating a programme which can also address the range of chronic conditions associated with ageing that may exist alongside dementia and impact on the person. The paper will end with a summary of the findings of a pilot project exploring the feasibility of delivering this programme in the UK. Recommendations of possible future directions this work will take will also be shared.

Self-Maintenance-Therapy in family rehabilitation programme

Barbara Romero, Alzheimer Therapiezentrum Bad Aibling, Germany,

With Self -Maintenance Therapy (SMT) and Alzheimer Therapy Centre (ATC) we proposed a systemic approach for maintaining patients' and caregivers' psy chosocial resourceS There are two systems that should be stabilised and preserved in a rehabilitation programme for patients with dementia:

  1. the self as an intra-individual system, and
  2. the social network as an interpersonal support system.

SMT integrates procedures from well-established methods like milieu therapy, validation, reminiscence therapy and psychotherapy - modified in accordance to the primary aim of SMT.

The Alzheimer Therapy Centre, founded in 1999, provides a three-four-week residential treatment programme for patients with dementia and their caregivers. The importance of this short-term intensive treatment programme lies in the interdisciplinary planned preparation of each individual family for the life with the disease at home. The aim was to reduce patients' loss of confidence in social interaction and withdrawal as well as to reduce patients' psychopathological symptoms like depression, apathy, agitation or aggression, and to facilitate their participation in daily life in a manner that fits their level of competence. Intervention with caregivers was designed to support their psychological well- being, to improve their competence to accompany the patient and to support their social integration. Short-term in-patient rehabilitation programmes for dementia patients are a new concept. Also, caregivers have not been consistently involved in rehabilitation programmes in the past although early results were very promising. Our programme was evaluated in a one group pre-treatment post-treatment design. The results showed a consistent improvement in patients' depression and in other psychopathological symptoms, which can be seen as directly beneficial for patients. Following treatment, caregivers also felt after the treatment less depressed, less mentally fatigued and restless, and more relaxed (Romero, Wenz, 2001 a.o). Currently, we are carrying out a controlled study with 6 months follow up to evaluate long treatment effects.

Improving the quality of life of persons suffering from dementia

Anja Declercq, K.U. Leuven, Belgium,
Co-author: Nele Spruytte

In the past decade several innovations and measures to improve the care for persons with dementia have been implemented in the Belgian care system. Examples are the federal Geriatric Care Program, improved diagnostics through memory clinics, introduction of person-centred care in residential care homes, small-scale living units for persons with dementia, meeting groups for people with dementia, and so on. Still, the road ahead is long and the efforts to improve the quality of life of people with dementia must be continued and consolidated.

In this presentation we offer an integrative overview of nine strategies for further enhancement of the quality of life of people with dementia. In general these nine strategies are:

  • ‘Tailor-made care’ responding to the needs of clients and his surroundings (including family caregivers)
  • The development of regional social support systems for people with dementia
  • Recognise, support and realise participation of family caregivers of people with dementia
  • Financing the care of people with dementia in conformity with their objective and subjective needs for care
  • Focus on safe, comfortable and secure living environments for people with dementia
  • Anticipate the growing diversity in the care for persons with dementia: varying groups of clients and diversification of caregivers
  • Education and training of specialised professional caregivers and attention to multidisciplinary teamwork
  • Continuing efforts in improving the non-medical treatment of dementia, in particular ways of connecting to and communicating with people with dementia
  • Investing in scientific expertise as a means for innovation and guidance with change trajectories

Each of these strategies will be elucidated with refreshing examples or with suggestions for innovation. One of the leading principles in implementing each of these strategies is the necessity to hear the voice of the clients (people with dementia and their families), because in the end it is their quality of life that needs to be improved.



Last Updated: Wednesday 21 October 2009