A family in need of support

Dr Anthony Martyr watches Grandad, Dementia and Me.

As a dementia researcher without a television I first heard about the documentary Grandad, Dementia and Me via Twitter. There are many people with dementia active on Twitter and most of those that I follow had an overwhelmingly negative reaction to the documentary. Having now seen it, I can understand why.

The documentary started with the grandson (the 'Me' of the title) asking his Grandad a series of questions which comprised him repeatedly asking whether his Grandad was aware that he had dementia. The grandfather clearly did not want to accept the diagnosis and yet the grandson and other members of his immediate family continued throughout the documentary to repeatedly label and discuss his dementia with him. For someone who does not acknowledge the presence of dementia – and awareness of dementia in people with dementia is something I have researched for a number of years – constantly reinforcing the diagnosis is not advisable. This was acutely evident in the programme.

The family’s lack of understanding of the condition and their numerous examples of how not to talk to a person with dementia was one of the fascinations (and frustrations) of the documentary, though I suspect this was not the intention of those behind the film. Indeed, the family seemed oblivious that what they were doing contributed in part to the grandfather’s anger and aggression. Unfortunately, his aggression led to him being sectioned and ended in one of the more upsetting parts of the documentary: the image of him sleeping on his hospital bed bored, frustrated and confused at his incarceration, aggravated yet again by the grandson reinforcing that he was there due to a disease that he refused to accept that he had.

The documentary is flawed but aspects of what it showed are a sad reality for many people. Everywhere there are families not coping with someone with dementia. Post-diagnostic support is available, such as practical information to deal with the symptoms; couples support where one of the dyad has dementia; psychosocial support to help maintain independence; and basic support about how to communicate with someone affected by dementia. This family would have keenly benefitted from being offered these and other resources. If his local memory clinic service had provided support and information to the family (or if this was provided and the family had read and incorporated the information in the grandfather’s care) this would have been a very different documentary.

As it is, the documentary could have easily been subtitled ‘A Family In Crisis’. It was the needless family crises that led to the negative reaction towards the documentary from those affected by dementia, it was the distress that the Grandad endured that should have been prevented by access to freely available information, guidance and support, and it was the overwhelming feeling of powerlessness and the inability to prevent what was happening to him that led to the most negative reactions. As a psychologist specialising in dementia I shared those reactions and concerns.

- Reviewed by Dr Anthony Martyr CPsychol PhD MSc BSc, REACH: The Centre for Research in Ageing and Cognitive Health, Department of Psychology, College of Life and Environmental Sciences, University of Exeter.

See also the BPS report on putting the person at the centre of dementia care, and our interview with Linda Clare from Exeter's IDEAL Project.

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