At our most recent session of Dementia Conversations on line, discussion included thoughts on differences in the experiences of individuals and carers according to the age at which dementia begins to affect our lives. And in amongst that, there were heart-felt comments about differences in the pain and stress experienced by family carers: wives and husbands compared with younger generations of daughters, sons and others.
For children (now adult) the relationship has been life-long. Dependency over decades has been with the child receiving love and practical help and support – infancy, schooldays and on through whatever grown-up life has brought. The reversal of roles may come slowly, but is often associated with the onset of illness and impairments in mum or dad. These new needs of mum or dad may come while the adult child is still caring for their sons and daughters, carrying household responsibilities and maybe pursuing a career. Hard time – demands for understanding and practical help which is intense and spread over a spectrum of deserving close relatives.
For many carers of husbands or wives who develop dementia, this comes after many decades of being together – love originating in our teens or twenties and enduring through growth and developments as we are transformed from youth into maturity, careers, children, successes and disappointments. But life may have been more complicated, some marriages fail after a short time, a second marriage or more may follow, sometimes bringing with it many positives, but also additional relationships which may be strained from the onset
So – this is not a straightforward question. Our group included spouse-carers and child-carers and others who were caring as in-laws. The strength of feelings and the depth of commitment is evident in all, whatever the details of the relationship.
There are few publications which report on studies that compare the experiences of spouse-carers and child-carers but the hints from these suggest that the pain and stress reported by spouse-carers is the greater: Mental health and wellbeing in spouses of persons with dementia: the Nord-Trøndelag health study - PMC (nih.gov)
Henry Brodaty, in 2009, provides a table drawing on publications up to that time, which suggests that overall, spouse-carers feel the greater distress:
Less strain being reported by: male carers, non-spouse carers (children or others), non-co-habiting, financially robust. Dementia not including Frontal lobe pathology, shorter time with dementia, positive long-term relationship, secure attachment, higher self-esteem and taking a problem-solving approach: Family caregivers of people with dementia - PMC (nih.gov)
That is not to say that being a child-carer comes without stress and dismay: What it means to be an adult child of a person with dementia - PMC (nih.gov)
Each week we post a blog from David Jolley where he shares his personal views on relevant subjects.
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