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.

Aims

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.