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P13: Person-centred care

Detailed programme, abstracts and presentations

P13: Person-centred care

P13.1. The stages of facilitating collaborative decision-making in dementia care networks


Introduction: Person-centred care is the preferred way of caring for people with dementia. Shared decision-making is an important element of person centred care. Little is known about facilitating shared decision-making with multiple participants in the context of dementia. The current study aims to describe the stages of facilitating decision-making in care networks of people with dementia.

Methods: We interviewed people with dementia, their informal caregivers and professional caregivers (total of 117 interviews). We analysed the interview data using framework analysis. The theoretical model of collaborative deliberation, describing the interactions between multiple participants in decision-making, acted as our framework.

Results: Our analysis resulted in six stages of facilitating decision-making in dementia care networks: 1) engaging with the network, 2) eliciting the problem that needs addressing now, 3) developing alternative options, 4) learning about alternatives by deliberating and trying, 5) constructing preferences based on differing values, 6) integrating preferences while balancing conflicting interests and respecting adequate timing. Developing alternatives and learning about the pros and cons of alternatives are two-way processes. Through discussing the pros and cons, new alternatives can be developed.

Conclusion: Collaborative decision-making in dementia care networks is a process of deliberating and trying of participants with potentially conflicting values and interests. Problem elicitation is an important element in this process because of the different perspectives of the participants involved. Collaborative decision-making in dementia is aimed at finding ways of balancing conflicting values and interests between different participants.

Practice implications: Person-centred decisions in dementia are built on a network approach that acknowledges potential conflicting interests between participants. The stages of facilitating collaborative decision-making in care networks of people with dementia help in structuring the process of reaching shared decisions.

P13.2. Creating a vision for change: Process evaluation of an appreciative inquiry approach to develop person-centred dementia care strategies in hospital wards

SCERRI Anthony, AGIUS Anne, GALEA Doris, INNES Anthea, SCERRI Charles

Background: The quality of care of persons with dementia in hospital settings is far from optimal and can be very challenging. This has been partly attributed to the fact that hospital staff are untrained in person-centred dementia care. Staff training has been shown to positively influence staff and patient outcomes, although they may not empowered enough to translate what they have learned in practice.

Objective: The aim of this study was to introduce and evaluate the application of an organisational development approach known as appreciative inquiry during which the researchers worked collaboratively with the staff to develop person-centred dementia care strategies in two geriatric hospital wards.

Methods: An average of 35 staff members in two geriatric wards attended six workshops (repeated four times) during which they were guided to develop a number of possibility (vision) statements of their aspirations for a better ward environment, based on the positive care experiences of the past that were previously collected through appreciative interviews. Following the workshops, a questionnaire, was distributed to all participants in both wards to collect their reactions to the approach used. 

Findings: Appreciative interviews were well received by the staff as they had the opportunity to reflect and share their skills with each other. All participants felt that they would recommend the workshops to their colleagues. Moreover, although the majority of the participants agreed that the themes discussed were not new to them, they felt that the workshops helped them to think about how to work in a more person-centred way and to develop action plans to improve the quality of care.

Conclusion: An appreciative inquiry approach has been positively accepted by hospital staff. Moreover it increased awareness and interdisciplinary collaboration to develop practical strategies for organisational change.

P13.3. Empowering care home staff to deliver dignified care to the person with advanced dementia

BROWN Margaret, MCWHINNIE Hazel, MCALISTER Janice, LOGAN Valerie, HERON Karen, BOOTH John, BAYLIS Maxine

This study used a participative approach to practice, learning and research in a project designed to explore innovative ways of enhancing dignity in eating and drinking for the person with advanced dementia living in a care home setting. The project team included family members, nurses, allied health professionals, support workers, catering staff and University researchers working together in a home for war veterans in Scotland.

An adequate nutritional intake is essential for physiological functioning and plays a key role in quality of life. Having no choice in what you eat and drink threatens dignity and personhood in a culture where choice of food and drink contributes to a sense of self.

The project involved six residents and their families. Staff and families attended an intensive education programme on eating and drinking in advanced dementia. Following this, for an intervention period of 12 weeks, a sensory framework was used to explore and record ways of improving the dining experience for the person with advanced dementia.

The residents maintained their nutritional status and their eating difficulties decreased. Families and staff reported improved understanding of the challenges faced by the residents and developed more open communication with one other. Staff report increased confidence that their approach is person centred and evidence informed. They also indicate a wish to be involved in more research projects.

Learning throughout the project has given staff a toolbox of interventions that they are beginning to use to deliver person centred care. This study has shown that empowering the nurse within a care home environment helps facilitate mutually beneficial partnerships between staff, residents and families. This participative approach may lead to care staff that are ‘research ready’.

P13.4. Dimensions of quality of life from the perspective of people with dementia – a meta-synthesis

DICHTER Martin Nikolaus, PALM Rebecca, HALEK Margaretta, BARTHOLOMEYCZIK Sabine, MEYER Gabriele

Background: Despite missing theoretical clarity, quality of life (Qol) has become a major concept as outcome in intervention studies in dementia research. There is no generally accepted definition of Qol for people with dementia. Lawton’s model (1991), which includes subjective and objective components, is widely used as framework for the development of Qol measurements and interventions, although it is not well empirically funded.

Method: The meta-synthesis (PROSPERO 2013: CRD 42013005014) followed four methodological steps: (a) comprehensive database search without time limit and subsequent forward and backward citation tracking, (b) data extraction using the template form of the Qualitative Assessment Review Instrument, (c) quality appraisal using formal criteria from the Critical Appraisal Skills Programme, (d) synthesis of findings based on principles and procedures of grounded theory. In particular, the constant comparative method guides the coding, identification of categories and synthesis. Two independent reviewers carried out all four methodological steps.

Results: Through comprehensive search and removal of duplicates 2.716 eligible references were identified. Application of inclusion criteria revealed eleven studies (from seven countries, published between 1996 and 2011) for inclusion. The papers covered reports on the perspectives of 373 people with dementia in all stages of dementia on their Qol. A total of 14 different Qol domains were identified: family, social contact and relationships, self-determination and freedom, living environment, positive emotions, negative emotions, privacy, security, self-esteem, health, spirituality, care relationship, pleasant activities and future prospects. Presently, the relationship between the domains is analyzed aimed to develop the final Qol-model. The results will be available in June 2015.

Conclusions: Our meta-synthesis will contribute to the theoretical development of the concept of Qol of people with dementia. The resulting dementia-specific model will provide a framework for the development, adaption and validation of dementia-specific Qol measurements and development of psychosocial interventions.

P13.5. Promoting continence for people living with dementia and long term conditions

DENNIS Jacqueline, EDWARDS Heather, NOONE Archie

The “Promoting Continence resource for People Living with Dementia and Long Term Conditions” is an example of partnership working involving people living with dementia and their families and carers with staff from across the health and social care sector. The project was led by the Care Inspectorate which is Scotland’s independent scrutiny and improvement body for care services in Scotland.

The resource has been designed as an easy read guide with an accompanying DVD to support the key messages that can be used by people to manage their own continence as well as by carers both informal and formal in a wide variety of settings. The resource is based on best practice and current research and is person centred in its approach, advocating thorough assessment and using strategies to maintain independence and dignity.

The stigma and assumptions that are made in relation to people with dementia and older people in general mean that incontinence is often accepted as an inevitable aspect of ageing.  This resource aims to highlight the fundamental and essential care and support that is required to give people the opportunity to remain continent.

There are currently 88,000 people diagnosed in Scotland with dementia, for many the expectation that they will remain continent especially when they move into a residential care setting is alarming low. There is growing evidence linking incontinence with the rate of falls mobility issues, increased risk of urinary tract infections as well as the impact on quality of life.

The presenters would like to demonstrate how involving people with dementia and their carers in the development of this resource has strongly influenced the key messages and produced a resource that combines current best practice with what matters most to people who are using care and support services.



Last Updated: Monday 28 September 2015


  • Acknowledgements

    The 25th AE Conference in Ljubljana received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Spominčica gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche
  • SCA Global Hygiene