Experiences of family carers of people with dementia + Music Therapy 1
Research type
Research Study
Full title
How do family carers of people with late-stage / complex dementia make sense of their experiences of engaging in Music Therapy alongside the person they care for?
IRAS ID
286118
Contact name
Margaret L Grady
Contact email
Sponsor organisation
UWE Bristol
Duration of Study in the UK
5 years, 3 months, 31 days
Research summary
Research Summary
How do family carers of people with late-stage / complex dementia make sense of their experiences of engaging in Music Therapy alongside the person they care for?
There are an estimated 670,000 unpaid carers in the UK looking after someone with dementia, saving the economy around £11 billion a year (Carer’s Trust 2018). The challenges of this complex role leave carers ‘twice as likely’ to suffer from poor health to their contemporaries (NHS Long Term Plan 2019). The accumulative losses the progression of dementia creates is ongoing, and many carers report a living bereavement, or ‘dementia grief’ (Blandin and Peppin, 2015). Deterioration in carers’ health may also lead to an earlier admission to care home or hospital for the person they care for (Etters et al, 2008).
Music Therapy (MT) is a clinical intervention delivered by qualified, state-registered music therapists. A growing body of research suggests MT is an effective intervention for people with late-stage dementia, supporting well-being and quality of life (Hsu et al 2015, McDermott et al, 2012). However, there is no recent literature focusing on the experiences of family carers engaging in MT alongside the people they care for.
Gloucestershire based charity, ‘Mindsong’, delivers home-based* MT for people with late-stage / complex dementia and their family carers. Six couples would be invited from this service to take part in the research. Three semi-structured interviews and recordings of music from one of the 12 weekly MT sessions would be analysed using Interpretative Phenomenological Analysis and Microanalysis respectively. Results would give a greater understanding of the experiences of family carers and whether MT is a suitable supportive intervention, with potential to influence clinical practice, policy and services.
* If Coronavirus restrictions are still in place at time of data collection, therapy and interviews will be conducted online using Zoom. Please see Protocol B.
Summary of Results
I would like to start by thanking all the participants that took part in this study.
Six couples (a person living with an advanced / complex dementia and their main family caregiver) were recruited for the study and participated in the study intervention, Mindsong's 'Music Therapy at Home' service. The couples were interviewed at three points, before, during and after the intervention. These interviews were transcribed and analysed using Interpretative Phenomenological Analysis (Smith, Flowers and Larkin, 2012). Each family caregiver also chose a video clip from their sixth session of Music Therapy for the researcher to analyse, using a method of Music Microanalysis. The video clips were also analysed against Kitwood's flower of psychological needs (Kitwood, 1997).
All six couples completed the study; two of the people living with a dementia sadly died before the end of the study. The family caregivers of these two people expressed their wish for the data to still be included in the analysis and results of the study, giving their permission for this to happen. (All data was anonymised from point of data collection.)
The study found that family caregivers made sense of their experiences of Music Therapy within the context of the relationship with the person they were caring for, which was steeped in experiences of dementia. The caregivers were profoundly affected by experiences of dementia. Although there were some positive experiences of caregiving, many caregivers had put their own lives on hold to care for their loved one. Some feared they were losing their sense of self. One caregiver experienced a physical and mental breakdown due to the caring role.
Music Therapy supported significant aspects of self for both the person with a dementia and the family caregiver. These have previously been identified as protective factors against negative experiences of dementia, and include a strengthened sense of self, increased self-esteem, feelings of social connectedness and an enhanced sense of meaning in life.
Crucially, the therapy provided opportunities for shared interaction and emotional connection which strengthened relationships, bringing moments of joy and hope. Successful skill-sharing meant that music was used as a tool beyond therapy, to ease difficult dementia experiences and further strengthen these important relationships. For two cases, at the end of the person with a dementia's life, music was used to maintain an emotional connection and soothe the transition between life and death.
This study reinforces the call for sensitive, home-based dementia support that encompasses the needs of the family caregiver, as well as the person living with a dementia. Implications for further research and recommendations for Music Therapy practice are also presented in my thesis.
REC name
Wales REC 1
REC reference
21/WA/0109
Date of REC Opinion
10 May 2021
REC opinion
Further Information Favourable Opinion