An exploratory study of the effect of dignity therapy on the morale and burden of community-dwelling persons with dementia and their caregivers

Abstract

Dignity therapy is a brief individualised narrative therapy designed for individuals facing terminal stages of cancer that has been shown to relieve existential distress and foster hope. More recently, it has also been investigated for other terminal conditions, including dementia and shown to be both feasible and acceptable though the outcome literature in this area is very limited. In dementia care, the focus is not just on the person with dementia but also on the caregiver, given the known devastating impact of caregiver morale and caregiver burden. This exploratory study acknowledges the significance of this dyadic interaction by seeking to examine the feasibility and outcome of adopting dignity therapy in community-dwelling persons living with mild cognitive decline and early dementia, and their caregivers as a dyad. More specifically it examined the effects of dignity therapy on morale, as assessed through hope and demoralisation scores and caregiver burden scores. A single treatment one-group pretest-post-test pre-experimental study design was used. One group of participants consisting of persons living with dementia and their caregivers were assessed using the Herth Hope Index (HHI), Demoralization Scale-II (DS-II), and Zarit Burden Interview (ZBI-12) before undergoing dignity therapy and again after two weeks after the intervention. Despite recruitment restrictions due to the SARS-CoV-2 virus Worldwide pandemic, a total number of six dyads took part in this study. All the participants completed dignity therapy in the timeframe offered and without significant difficulties. This showed that dignity therapy is feasible also in persons living with mild cognitive decline and early dementia and their caregivers when treated as a dyad. Despite low baseline levels of demoralisation, hopelessness and caregiver burden in our sample, dignity therapy had a statistically significant positive impact on demoralisation in persons living with dementia (T = 1, z = - 1.992; p = 0.046) with a large effect size (r = 0.575) despite the small sample size. In conclusion, the dyadic implementation of dignity therapy in early dementia is feasible and may decrease demoralisation in people affected by cognitive decline. It is recommended that the dyadic implementation of dignity therapy is further investigated as a psychological intervention in dementia care for hopelessness, demoralization, and caregiver burden in a larger sample using a randomized controlled design.