ASSFAP: A seven stepped facilitated action planning process for recognising and meeting the spiritual needs of people with advanced dementia.

Lead Research Organisation: University of Aberdeen
Department Name: School of Divinity, History and Philosop

Abstract

In 2010 the applicant completed a piece of work funded by the AHRC which looked at the spiritual needs and lives of people with profound learning disability. Understanding the spiritual lives of people with profound and complex learning disabilities: a community oriented action research approach. AH/F011482/1.

A product that came unexpectedly out of this study was the ASSFAP: a seven stepped facilitated action plan. This educational and process tool/system was specifically designed to be used by communities to explore, understand and respond to the spiritual needs of people with severe intellectual and cognitive impairments through the use of an action planning system of spiritual care development and delivery. Whilst there are recognisable differences between the two populations, it was felt that this process could be transferred and applied to other settings and that it could provide for the needs of a wide range of people with profound communication difficulties.

People with advanced dementia are a group of people, like those with profound learning difficulties, who are often overlooked and can be the subject of poor care through a lack of knowing what to do and how to be with them. This resource provides a method of "doing and being" for those who care for them professionally and within families, which enhances the quality of life of both the carers and the people with communication difficulties.

The project presented here focuses on making this resource (ASSFAP) available to the community of carers who look after people with advanced dementia; either those who live either at home, in residential care or in hospital. It comes at a time when the care of frail elderly people has been spotlighted by The Care Inspectorate (formerly the Care Commission) as requiring urgent attention. There is growing concern that care of older people, particularly those with advanced dementia, is being reduced to what has been called "bed and body work" to the enormous detriment of the older person and shame of our society.

Planned Impact

The project would have impact within the following areas:

1. Enhancing the quality of life and mental health of people with advanced dementia, their families and carers. The project would provide a tested and testable approach that can be used effectively and easily within families, in healthcare contexts, within social care institutions and in religious communities. The approach would facilitate better communication with people who have advanced dementia and in so doing should contribute to the reduction in anxiety and depression that accompanies the inability to be heard and to have one's needs recognised and effectively met.

2. The project would facilitate effective third sector involvement in dementia care by drawing together church communities and established dementia care services in a way which enables each to contribute to the process of dementia care.

3. The process of developing MAPS (see note below) and working within communicative communities is designed to foster and sustain communities of care. By drawing people together around the needs of an individual, the project encourages community formation and development. By providing tools for accessing spiritual needs and perspectives, service providers particularly religious communities, (i.e. a relatively untapped source of social capital), would be equipped and able to get involved with an important aspect of the care of people with advanced dementia at home, in the community and within care facilities.

4. The project would contribute to Scotland's National Dementia Strategy, particularly under the section focused on "Policy Rights, Dignity and Personalisation - human rights." Article 9 of the Human Rights Act (1998) states clearly that: "Freedom to manifest one's religion or beliefs shall be subject only to such limitations as are prescribed by law and are necessary in a democratic society in the interests of public safety, for the protection of public order, health or morals, or for the protection of the rights and freedoms of others." If, as the research on spirituality and advanced dementia seems to indicate, very little is known about how to enable people with advanced dementia to have their spiritual and religious needs met, then a project such as this could be very important in achieving the goal of enhancing dignity and ensuring human rights.

5. Similarly the project would contribute to the Department of Health's "Living well with dementia: A National strategy for dementia care" document. In particular it would feed into and enhance the documents emphasis on good practice and person-centred approaches to dementia care.

6. The project would bring benefits to religious communities by offering ways of accessing experience and developing practical strategies that can enable them to communicate with people for whom the communication of spiritual and religious information can be highly problematic.

7. The project would also benefit NHS and social care staff who would be given a deeper understanding of the experiences of people with advanced dementia and a transferable care plan system that would enable identified needs to be met.

8. The approach has the potential for application across a wide range of groups and individuals including religious communities, social care facilities, NHS education and nursing and social work training and practice. As such, if effectively developed and properly packaged and marketed, it has clear commercial potential which should be sustainable over time. Bearing in mind the rising numbers of people who are developing dementia, a package and an approach such as this, sadly, has long term potential.

Note: MAPS (Making Action Plans) is a tool drawn from person centred planning. It combines imagery and words to produce a plan that offers a meaningful picture of the needs and capabilities of the individual.

Publications

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Description The purpose of the follow on grant was to pursue unexpected findings from previous projects into a practical development. This is not a typical research project and the "method and findings" are, in practical terms, the process and outcomes achieved through review and feedback.

The Re-Vision Project took the previous research based community oriented action research model (AH/F011482/1)and applied it to a different group, namely people with advanced dementia.

The aims of the Re-Vision project

• To test the resource developed from a previous AHRC study to a different client group.

• To provide a sustainable, practical and generalizable resource which supports the spiritual
needs of people with advanced dementia.

• To encourage the use of creativity in the care of people with advanced dementia.

• To demonstrate the value of humanities research and development work within health and social care settings for the promotion of wellbeing and resilience within caring communities.


The specific objectives of the Re-Vision Project

To recruit 10 health and social care professionals working in different settings to use the
resource.

To offer support to these "experts" to use this resource through residential workshops

To facilitate and monitor the use of the resource in 10 sites with people with advanced
dementia.

To gain feedback from all the participants on all of the sites

To produce a sustainable and generalizable resource pack based on the feedback which can be rolled out and applied to a broad range of people with advanced dementia.

To consider the generalizability of the resource to those with other conditions which render them vulnerable and in need of compassionate care.

Summary of outcomes

We have adapted the original research based steps in the light of the information given us by our experts. Our experts have welcomed the process and undertaken to continue using the Re-Vision framework in future practice, not only their own but in their organisations.

The project was welcomed by all participants; staff, people with dementia and relatives. It has shown a way by which people with advanced dementia and severe communication difficulties can be involved creatively in developing a spiritual action plan. This plan and its outworking by staff, family and friends enhances the quality of daily lives, gives hope and even joy at a difficult time and offers a way of being and belonging to all involved.

Facilitators of the Re-Vision framework should go through a recruitment and training process which ensures high quality and consistent practice which is true to the principles of the model. Facilitators have a resource book which explains the process and a story journal for each person with dementia they work with. There is back up support from the Re-Vision designers.

Conclusion

Our research and development work has thus produced a care and support package aimed at facilitating genuinely person-centred care and support of people with dementia (particularly people with advanced forms of dementia). The approach is story based and involves the creation of a community of people who are committed to honouring and sustaining the identity, biography and present experiences of the individual with dementia. In line with the Adults with Incapacities Act, the approach is designed to offer opportunities to maximise the residual capacity of individuals with dementia. It is based on the premise that caring for and with people with dementia requires a community. Our previous research has shown in concrete ways how such a community can be formed, facilitated, motivated and sustained to care and support people with advanced dementia. Our current challenge has been to help carers and families to see that this approach should be the norm rather than the exception.

We have developed an evidence based practical framework for the spiritual care of people with advanced dementia. This is the first of its kind and it speaks directly to the importance of dignity, respect and personhood. These concepts are now being used as the watch words for caring for frail vulnerable older people in the light of the poor care provided which has been reported in a number of recent cases. Our framework is central to the provision of good, compassionate care.

We have produced resource and training materials which will allow residential care providers to ensure that staff are well versed in the process and its wider context and implications. These training materials involved face to face time with the designers and researchers which give maximum opportunity to be trained well.

Re-Vision provides a new way of being with and relating to people with advanced dementia. There is a focus on the positive life enhancing approach to the person and the materials are underpinned by the principles of equality, respect and dignity.

The materials are based on what is practical, sustainable and achievable and have a clear and simple action plan.

Re-Vision provides real support for families who find it reviving and sustaining. It gives them a purpose and something to focus on as their relatives become less able to communicate. It allows them to retrieve and sustain the personality of their loved one and brings them comfort.

People with advanced dementia have clearly benefited from being part of this process. The have shown that they are able to engage with it and the subsequent activities that come out of the story telling.

Paid staff find it provides a different vision and a way of connecting that moves beyond bed and body work. It encourages dignity and compassion and retains the person within and despite a diagnosis of dementia
Exploitation Route Re-vision is entirely for use in non academic contexts.
It is currently used in:
• Residential care homes as part of care planning and person centred care and has part of the settling in strategy
• Sheltered Housing as part of community building
• Church communities as part of pastoral care approaches

The programme is currently in use but will formally be launched early in 2015.
Sectors Communities and Social Services/Policy,Healthcare

 
Description The findings have been used as the basis for an extensive educational and training programme which is now being rolled out and made available to health and social care facilities within the UK and beyond. The roll out project is called the Purple Bicycle Project. Details can be found here: http://www.abdn.ac.uk/sdhp/purple-bicycle-project-538.php These resource and training materials will allow residential care providers to ensure that staff are well educated and prepared to recognise the spiritual needs of people with advanced dementia. In 2016 the materials were utilised in a project funded by the Life Changes Trust which seeks to roll out the findings of the project across Scotland.
First Year Of Impact 2015
Sector Communities and Social Services/Policy,Healthcare,Other
Impact Types Cultural,Societal