The subject of this blog is a particularly personal one for me. As I was completing my GCSE’s my Mom became the main carer for my Grandad, who had been diagnosed with Alzheimer’s Disease. This diagnosis impacted all our lives, not only through witnessing the decline that the disease inevitably brings, but also the pressures and anxiety particularly faced by my Mom who juggled work, family life and caring for my Grandad. Music played a central role in my Grandad’s care and recordings of familiar pieces helped to relieve his feelings of frustration and anxiety, as well as being a means of connection between us all. This experience certainly played an influential role in my decision to train as a Music Therapist and to explore how music therapy may be able to provide support for the thousands of people who are providing care for their loved ones living with dementia.
The numbers of people being diagnosed with dementia are widely publicised. Alzheimer’s Research UK (2015) have stated that, within the UK, there are currently 850,000 people living with dementia. In order to ensure those receiving this diagnosis can remain in their homes for as long as possible, it is believed that there are over 700,000 family members or friends providing care and support (Alzheimer’s Research UK, 2015). As well as the benefits this care brings to the person living with dementia, it is thought that this saves the UK over £6 billion a year in health care costs (Alzheimer’s Society and Welsh Government, 2008). However, the negative impacts of becoming a carer for a loved one with dementia has only recently become an area explored by researchers and dementia charities in the UK. A report created by Alzheimer’s Research UK (2015) highlighted that these negative impacts can include the change in relationship with loved ones, the feeling of social isolation, financial difficulties and a negative effect on physical and psychological health. When carers do reach out to medical professionals for help and support in these areas, access is often a challenge. Dr Doug Brown, the Director of Research at the Alzheimer’s Society has stated that ‘carers tell us that even when they have taken that difficult first step and gone to see their GP, accessing any sort of face-to-face therapy presents a whole new challenge – from finding the time to attend and getting care cover to the extremely long waiting times facing many for these treatments’ (Alzheimer’s Society, 2018). A wide range of psychological therapies and researchers have begun to recognise these challenges, particularly in providing accessible support for those family carers experiencing psychological difficulties such as anxiety and depression.
Research has found the family carers of people with dementia are experiencing much higher rates of anxiety and depression than the general population. For instance, Watson et al (2018) stated that ‘80% of dementia family carers experience depression, compared with 6-9% in the general population of adults over the age of 55’, while Cooper et al (2006) found that ‘anxiety disorder may be the commonest mental health problem in caregivers of people with dementia’. Several researchers (Joling et al, 2012; Livingston et al, 2013; Sommerlad et al, 2014; Barnes and Markham, 2018) have explored the potential of manual- based interventions in supporting family carers experiencing anxiety and depression with mixed results. The START programme (Strategies for Relatives) was one manual- based intervention that appeared to provide some benefits for carers in this area (Livingston et al, 2013; Sommerlad et al, 2014). This intervention incorporates aspects of education, CBT and relaxation techniques into an eight-week programme delivered by graduate psychologists and was found to ‘reduce depression and anxiety for family carers of people with dementia when measured at eight months and two years after they had received the intervention’ (UCL, 2019). However, such interventions provide little scope for opportunity to discuss issues not included within the devised manual and some carers may find it difficult to verbally articulate their emotions around their role. A more flexible approach, such as that potentially offered by music therapy, may be able to play a part in developing a wider-ranging, client-led means of carer support.
Several research studies and case studies (Aalbers et al, 2017; Zhao et al, 2016; Erikkilä et al, 2011; Guiterrez et al, 2015; Werner et al, 2015; Summer, 2011; Hest- Van de Witte, 2011) have identified music therapy as beneficial in supporting those within the general adult population experiencing anxiety and depression, the group in which the majority of family carers fall. Reviews carried out by Zhao et al (2016) and Aalbers et al (2017) found that music therapy was particularly effective in reducing symptoms of depression and anxiety when combined with ‘treatment as usual’, typically medication. This may present as an opportunity for Music Therapists to work alongside medical professionals to develop projects, awareness and a referral process for family carers reporting such issues.
However, currently there appears to be little music therapy provision in place specifically to support family carers of people with dementia that does not include the loved on they are caring for. To date, only two research studies have been published that explores music therapy and its possible impact on the symptoms of anxiety and depression with this group (Baker et al, 2018; Baker and Yates, 2017). Both studies used group song-writing as the means to explore feelings around their care giving role so, although this suggested potential benefits for the clients involved, little is reported about the impact of other ways of working or engaging in music therapy.
I believe that, as Music Therapists, we may able to offer more to the ‘silent army’ of family carers. If work in this area is already being carried out, more can be done to document and advocate for the role the arts therapies could potentially play for this group. Through doing so, carers themselves may become more aware music therapy can be for them, not just for those they are caring for. I personally feel that, by seeing beyond their caring role, we may be able to develop ways to allow carers to explore how their lives have been changed as individuals and the added pressures this brings. To do this, I believe it would be beneficial to explore the possibilities of collaborating with carers and other medical professionals to create a relevant, client-led service that is shaped by the needs of those supporting their loved ones living with dementia.
Aalbers, S., Fusar-Poli, L., Freeman, R., Spreen, M., Ket, J., Vink, A., Maratos, A., Crawford,M., Chen, X., Gold, C. (2017), ‘Music Therapy for Depression’, Cochrane Database of Systematic Reviews [Online] Available at https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD004517.pub3/full
Alzheimer’s Research UK (2015) Dementia in the Family: The Impact on Carers. Available athttps://www.alzheimersresearchuk.org/wp-content/uploads/2015/12/Dementia-in-the-Family-The-impact-on-carers.pdf
Alzheimer’s Society (2018) Carers for people with dementia struggling in silence. Available at https://www.alzheimers.org.uk/news/2018-06-22/carers-people-dementia-struggling-silence
Alzheimer’s Society and Welsh Government (2008) National Dementia Vision for Wales: Dementia Supportive Communities. Available at https://gov.wales/docs/dhss/publications/110302dementiae n.pdf
Baker, F., Stretton-Smith, P., Clark, I.N., Tamplin, J,. Lee, Y. (2018), ‘A group therapeutic songwriting intervention for family caregivers of people living with dementia: A Feasibility Study with Thematic Analysis, Frontiers in Medicine [Online] Available at https://doi.org/10.3389/fmed.2018.00151
Baker, F and Yeates, S. (2018), ‘Carers’ experiences of group therapeutic songwriting: An interpretative phenomenological analysis’, British Journal of Music Therapy, 32(1), pp. 8-17
Barnes, C., Markham, C. (2018), ‘A pilot study to evaluate the effectiveness of an individualized and cognitive behavioural communication intervention for informal carers of people with dementia: the Talking Sense programme, International Journal of Communication Disorders, 53 (3), pp.615-627
Cooper,C., Balamurali, T.B.S., Selwood,A., Livingston,G. (2006), ‘A systematic review of the prevalence and covariates of anxiety in caregivers of people with dementia, International Psychogeriatrics, 19 (2), pp. 175-195
Erkkilä,J., Punkanen, M., Fachner, J., Ala-Ruona, E., Pöntiö, I., Tervaniemi, M., Vanhala, M., Gold, C., (2011), ‘Individual Music Therapy for Depression: Randomised Control Trial’, The British Journal of Psychiatry, 199, pp. 132-139
Gutuerrez, E.O.F., Camarena, V.A.T., (2015), ‘Music Therapy in Generalized Anxiety Disorder’, The Arts in Psychotherapy, 44, pp.19-24
Joling, K., O’Dwyer, S., Hertogh, H., van Hout, H. (2017), ‘The occurance and persistence of thoughts of suicide, self-harm and death in family caregivers of people with dementia longitudinal data analysis over 2 years, International Journal of Geriatric Psychiatry, 33, pp. 263-270
Livingston, G., Barber, J., Rapaport, P., Knapp, M., Griffin, M., King, D., Livingston, D., Mummery., C., Walker,Z., Hoe, J., Sampson,E., Cooper, C. (2013), ‘Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial’, British Medical Journal [Online] Available at https://www.bmj.com/content/bmj/347/bmj.f6276.full.pdf
Sommerlad,A., Manela,M., Cooper,C., Rapaport,P., Livingston,G. (2014), ‘START – coping strategy for family carers of adults with dementia: qualitative study of participants’ views about the intervention’, The British Medical Journal, [Online] Available at https://bmjopen.bmj.com/content/bmjopen/4/6/e005273.full.pdf
Summer, L (2011), ‘Music Therapy and Depression: Uncovering Resources in Music and Imagery’ in Meadows, A. (ed.) Developments in Music Therapy Practice: Case Study Perspectives. Gilsum: Barcelona Publications, pp. 486 – 500
University College of London (2019) START Project. Available at https://www.ucl.ac.uk/psychiatry/research/mental-health-older-people/projects/start
Van Hest- de Witte, I., Verburgt,J., Smeijsters,H. (2012) ‘ Music as life and lifeguard: Music Therapy for an older adult with depression’ in Meadows, A. (ed.) Developments in Music Therapy Practice: Case Study Perspectives. Gilsum: Barcelona Publications, pp. 556 – 568
Watson, B., Tatangelo, G., McCabe,M. (2018), ‘Depression and Anxiety Among Partner and Offspring Carers of People With Dementia: A Systematic Review’, The Gerontologist, 20, pp.1-14
Werner, J., Wosch, T., Gold, C., (2017), ‘Effectiveness of group music therapy versus recreational group singing for depressive symptoms of elderly nursing home residents: pragmatic trial, Aging & Mental Health, 21(2), pp. 147-155
Zhao, K., Bai, Z.G., Bo, A., Chi,I., (2016), ‘A systematic review and meta-analysis of music therapy for the older adults with depression’, International Journal of Geriatric Psychiatry, 21, pp.1188-1198