Palliative Care Project - Beyond Barriers

Overview

Quality of life and the eventual dying process for people with dementia in the later stages of the disease are arguably neglected area of dementia care. The person may be faced with a poor quality of physical health, little or no verbal communication and a lack of capacity. This period may last for up to two years and is a challenge for not only the person with dementia but also for relatives and care staff.

The Beyond Barriers Project attempted to address some of these serious care deficiencies. It was a two -year project that commenced in March 2006, funded by the Scottish Government and a partnership between Alzheimer Scotland, the Care Commission and Dementia Services Development Centre Stirling.

Palliative Care Approach

The aim of this innovative project was to develop a palliative care approach to the care of people in the later stages of dementia living in care homes in Scotland. This was achieved by creating approximately 100 dementia and palliative care champions and involved fifty care homes.

Relatives and Staff

An important part of the project was to give knowledge and skills to relatives (relative is used as an inclusive term meaning relatives, partners or friends) and for staff to gain a perspective of relatives needs.

Education

The project consisted of a three day education programme for both relatives and staff. Two senior members were invited from each home to take part and to identify at least one relative to also participate in the course. The staff had a further five learning support sessions.

Communication and Person Centred Care

The focus of the course placed communication at the heart of the sessions. It acknowledged the importance of person centred care and examined how a palliative care approach could enhance the quality of life at this stage of the illness. An open approach was adopted that dying with dementia or of dementia will occur, which accepted that dementia is non curative and for those people who reach the later stages of the illness will be terminal.

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