I work with elderly people with dementia in care homes run by Methodist Homes. I recently came across a case which troubled me and caused me to search related literature for similar instances. I was hoping to find advice, protocols and ideas as to how to assist and work with people going through this experience, but I discovered that there is very little research on the topic in both the music therapy and wider literature. The topic that I was researching was grief and dementia. I came across countless papers and articles covering the grief of a caregiver, spouse or other close family members when a person with dementia dies, but very few on the grief of a person with dementia when their spouse or family member dies, which is what I was witnessing first hand. The papers that I found were not music therapy based but were from other health care professions’ journals such as The American Journal of Hospice & Palliative Medicine and The Journal of Geriatric Psychiatry and Neurology.
My case involves a married couple who were living in the same care home, both with dementia and both still happy and in love. The husband died unexpectedly and now his wife is struggling to understand what has happened. Each day brings a different presentation. Some days she doesn’t remember what has happened and enters in to in a cycle of agitatedly asking where he is, facing the constant re-traumatisation of learning that he is dead and then denial as she shouts at staff, accusing them of lying, and goes off in search of him. Some days she is aware and seems to be able to grieve in a more accepting manner. Other days she wanders the unit looking for him although without the urgency or aggression shown previously.
I have had one assessment session with this lady. She was wandering the unit constantly, looking for her husband. She was not agitated or aggressive but had a look of quiet determination about her. I invited her in to my room and we talked. I asked her about her husband, as I remembered reading about successful therapeutic interventions such as sharing favourite memories of the deceased and the life they lived (Gataric, Kinsel, Currie, & Lawhorne, 2010). I carefully spoke of him in the past tense and she did not correct me. She spoke of him in the present tense and I did not correct her. We spent 30 minutes together starting in the music therapy room, moving to her bedroom and finishing in the dining area. Her desire to find her husband made it necessary to travel with her in order to be able to spend any time with her. This was a significant interaction as other staff had reported that they were finding it difficult to spend any length of time with her without her mood becoming heightened and anxious. I found that in the 10 minutes that we spent in the therapy room I was unable to introduce music of any kind. Initially I thought this was because it did not feel appropriate but on reflection I wonder what else might have stopped me. My own emotional response to her situation was profound. I struggled not to become overwhelmed by the depth of my feelings elicited by her loss and her inability to process what had happened. I wonder; if this could have blurred the boundaries between us; how to try to get past this if it is the case; how to begin to incorporate music in to the sessions?
My initial search through the literature seemed to reflect a lack of research in the area of Grief and Dementia. It has also highlighted other cases in my caseload that relate to the topic such as anticipatory grief for the husband where his wife has severe dementia, stage 7 in the global deterioration scale (Resiberg, Ferris, de Leon, & Crook, 1982) and a lady whose husband has died but her family have chosen to not keep reminding her of the loss. “The choice of whether to lie to a loved one or re-traumatise her is no choice at all; both can have devastating emotional consequences.” (Grief & Myran, 2006). I find myself still seeking guidance and other experiences in this area of dementia work. Supervision and peer supervision will be invaluable. If anyone has come across a similar case or any relevant reading that might help me please get in touch using the comments.
Gataric, G., Kinsel, B., Currie, B. G., & Lawhorne, L. W. (2010). Reflections on the Under-Researched Topic of Grief in Persons With Dementia: A Report From a Symposium on Grief and Dementia. American Journal of Hospice & Palliative Medicine / Vol. 27, No. 8, 567-574.
Grief, C. J., & Myran, D. D. (2006). Bereavement in Cognitively Impaired Older Adults: Case Series and Clinical Considerations. Journal of Geriatric Psychiatry and Neurology / Vol. 19, No. 4, 209-215.
Resiberg, B., Ferris, S. H., de Leon, M. J., & Crook, T. (1982). The global deterioration scale for assessment of primary degenerative dementia. American Journal of Psychiatry, 1136-1139.