Letter: All have a part in debates on dementia and end-of-life dilemmas

Guardian (UK) |


In much of the recent correspondence and features on end-of-life dilemmas (Campaigners fail to overturn ban on assisted suicide, 26 June; The hidden costs of dementia, 26 June), I have seen little acknowledgment that within the categories of the terminally ill, the aged, Alzheimer's and dementia lie - too often hidden from view - the learning-disabled: those middle-aged and older men and women who lack capacity (or seem to) but whose bodies are as strong and fit as their normal peers. Whether the alleged incapacity is a consequence of an autistic spectrum disorder, cerebral palsy, Down's syndrome or other disabling handicap, they are there but rarely get mentioned. Those of us who are intimately associated with the lives and deaths of the learning-disabled know there are issues around illness, hospital treatment, end-of-life plans, capacity, "do not resuscitate" diktats, consent and simple ageing that need as much attention as any other group. The lives of the learning-disabled are as worthy of recognition and respect as their peers. Just because these lives are rarely associated with the workforce, businesses and trade unions, they must not be excluded from the debate on, for example, assisted dying, and what George McNamara of the Alzheimer's Society pleads for in your article on dementia: "leadership and integration across the system". That should be for all people. Michael Baron Chair, National Autistic Society, 1962-67

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