Caring for a Parent living with Dementia and changes in Family Relationships

Prof Elizabeth Peel, Loughborough University, UK

Elizabeth Peel is a Professor of Communication and Social Interaction in the Department of Social Sciences, Loughborough University, UK @profpeel

Book Cover for ReValuing Care in Theory, Law and Policy

ReValuing Care in Theory, Law and Policy: Cycles and Connections

Caring for a parent living with dementia is a stressful thing to do. We know quite a lot about spouses or partners who are cast in a caring role because their loved one develops dementia, but we know much less about the experiences of adult children of parents with dementia. Recent Australian research [1] has found that sixteen per cent of their sample of over 500 family carers had contemplated suicide in the previous year. We also know that dementia care disproportionately impacts women [2].

In my book chapter called ‘“It has had quite a lot of reverberations through the family”: Reconfiguring relationships through parent with dementia care’ in the Revaluing Care edited collection, I consider parent care by examining the accounts of eleven people who had cared for their mother or father. These people participated in the focus groups in the ‘Duties to Care’ project or the interviews in the ‘Dementia Talking’ project (see http://www.dementiaproject.net/).

Some of the behaviour changes in their parent had a big impact on these participants. For example Derek* said ‘it’s terrible to think your own mother doesn’t know you’, and he found it very difficult to cope when his mother thought that he was his father. Another man, James, pretended to be his father in order to keep his mother calm and content. These two examples show how parent dementia care can change how relationships in families usually are – those normative ‘rules’ about roles in families – into something new and reconfigured by the illness.

These participants also talked about how disagreement between themselves and their brothers or sisters also made parent care difficult. All but one of the people I interviewed emphasised conflicts with their sibling rather than a more collaborative approach – working in partnership to care for, and support their parent. Victoria was the lone voice, in this study, who said about her sister, ‘we keep each other sane’.

The tensions that they discussed with their siblings included having different views about the state of their parent’s health, money, and how they communicated with their parent. For instance, as Jan said ‘the worst thing was trying to communicate to my siblings how bad mum was’. In some cases, like Jan’s, relationships between siblings had ‘totally broken down’. In other cases, families had divided roles between them as a way of managing potential disagreement as well as the tasks and responsibilities involved in caring for a parent living with dementia. For example, Sue said that her sister has ‘the cash card but I keep my eye on the bank account’.

Caring for a parent living with dementia can include managing and coping with behavioural and psychological symptoms, managing finances, dealing with health and welfare decisions, incontinence, and making difficult decisions towards the end of life.  Understanding the perspectives of those providing care to a parent with dementia – a relatively common, if not anticipated experience – may offer a lens on families and the business of caring more broadly. Damien Riggs and I have written a book about kinship that further examines these, and other, issues [3]. Our book Critical Kinship Studies was recently published by Palgrave Macmillan.

* These are not participants’ real names.

References

[1] O’Dwyer, S.T., Moyle, W., Zimmer-Gembeck, M. et al. (2016) Suicidal ideation in family carers of people with dementia. Aging & Mental Health, 20(2), 222-230.

[2] Erol, R., Brooker, D. & Peel, E.  (2016) The impact of dementia on women internationally: An integrative review. Health Care for Women International, 37(12), 1320-1341. Available: http://www.tandfonline.com/doi/full/10.1080/07399332.2016.1219357

[3] Riggs, D.W. & Peel, E. (2016) Critical Kinship Studies: An introduction to the field. London: Palgrave Macmillan. Available: http://www.palgrave.com/it/book/9781137505040

Leave a Reply