Living Well With Dementia: Enhancing Dignity and Quality Of Life, Using a Novel Intervention, Dignity Therapy

Project Duration

August 2013 - August 2014

Funder

NHS Tayside; QNIS/Burdett; Alzheimer Scotland

Aims

The overall aim of this study is to assess the feasibility, acceptability and potential effectiveness of (modified) Dignity Therapy to improve the quality of life and reduce psychological and spiritual distress in individuals with early stage dementia.

Dignity Therapy is a unique individualised brief intervention developed for the purpose of relieving distress and enhancing the end of life experiences of terminally ill patients. It is one of the only proven psychosocial interventions to make a difference to the quality of patient care at the end of life. It provides patients with an opportunity to reflect on issues that matter most to them or that they would most want to be remembered. It has been shown to heighten a person's sense of dignity. Dignity Therapy can also significantly improve the quality of life experience for patients and families. Dignity Therapy has been tested in different populations such as the frail elderly, older people with cancer and in care homes, as well as, in different cultures, but not previously with people with dementia, who are not yet at the end of life.

The hypothesis for this study is that the use of a Dignity Therapy intervention will reinforce dignity and quality of life for the person with dementia whilst they are still able to participate fully in the process. Thereby, not waiting until they are grossly impaired, terminally ill or actively dying; by capturing a sense of who they are and who they have been.

In order to perform Dignity Therapy each therapist undergoes training (three days), currently provided in Winnipeg, Canada. Two members of the research team have already completed full training. We have a separate researcher to carry out the data collection and data analysis.

Methods

The study is a feasibility mixed method study. 

Data will be collected using standard outcome measures collection of standard demographic measures and a qualitative interview. 

All participants will be asked to take part in a qualitative one to one interview. The aim of this qualitative component is to explore the patient and family members experience of Dignity Therapy as an intervention to improve dignity related distress and the quality of life of the person with dementia and their family.

Outcomes and Findings

Johnston B., Lawton S., Munro G., Murray J., Gibb J., Rodriguez C. and Law E. (2014) Living well with dementia: enhancing dignity and quality of life, using a novel intervention, Dignity Therapy, QNIS
http://www.qnis.org.uk/wp-content/uploads/2015/02/Living-Well-with-Dementia-Report.pdf

The Queen’s Nursing Institute Scotland (2015) Telling the Story- Impacts of the Delivering Dignity Programme in Scotland, Queen’s Nursing Institute Scotland: Edinburgh
http://www.qnis.org.uk/wp-content/uploads/2015/04/Delivering-Dignity-report-FINAL.pdf (p26)

Stage of Development

Completed.