Dementia and End of Life

Dementia is a progressive condition, and the end-stage is death. Many people with dementia die with dementia not from the dementia – that is they die from another condition perhaps a chest infection or as the result of a fall and it is tempting to consider these incidents as merciful. Few people with late-stage dementia die at home.

A diagnosis of dementia is an opportunity to come face to face with our own mortality – and that of those we love. It may not be an opportunity everyone wants to embrace but in some ways this diagnosis gives us all a chance to accept our mortality and if desired to plan for how we would like our own end of life to be. Many say that although they found the subject difficult to face most have been strengthened by the experience of considering their own end and have achieved some measure of peace from doing so.

It is still frequently the case that a diagnosis is received late – that is, after the disease which causes dementia has already progressed and the symptoms are obvious and already disabling. This may mean that those who have been diagnosed with dementia are often unable to view their own future or to plan ahead and thus the decisions about end of life fall upon the main carer and the family of the person with the diagnosis. A timely diagnosis can be more upsetting in that the person diagnosed will be in a position to understand and be aware of the prognosis, but it does give the opportunity for them to take control and be active in planning their dementia ‘journey’ and its inevitable end.

For the carer, the diagnosis can be seen as an opportunity to re-think priorities about end of life and to attempt to establish the feelings and wishes of the person who has been diagnosed. We should be careful at this stage not to attribute our own feelings about these matters to a parent, a life partner or a close relative. Even if the gradual loss of cognition fills you with dread and you consider that you ‘would rather be dead than demented’ this does not mean that this is how your loved-one feels. Feelings can change over time and even if in the past, the person you are caring for expressed certain wishes there is no certainty that they still feel the same. Indeed, someone with dementia may feel quite happy and contented with life and be unaware of the feelings of sadness and despair experienced by their carer. They may still feel that life is very worth living – even reduced as it is. But then again they may not and it may be that they are frustrated angry and despairing and genuinely believe that their life is not worth living. Conversely the carer – especially if a lifelong partner may wish to prolong life at all costs and may not feel able to think pragmatically about death.

If someone with dementia is admitted into a residential care home, then end of life wishes should be ascertained and included in the care plan. The care plan should also be regularly reviewed. If you are the main supporter for someone with dementia it is perfectly in order for you to inform the care staff about end of life wishes if no enquiry is made about this and it is a good idea to make sure the care plan does include them. Similarly, on admission to hospital this information should be made clear. These conversations can be difficult, and it is easy for the care home or hospital staff to omit them. If the person you care for has firm wishes, make sure that they are recorded and as much as possible, acted upon.

Establishing end of life wishes can be a very important part of caring and if discussing these matters after diagnosis is painful, carers can at least be sure that they are doing an important and loving thing. Sometimes it is very difficult for people with dementia to make their wishes known. An important factor is the loss of the ability to foresee or understand the consequences of ones actions or even to think clearly about the future. People with dementia have a tendency to exist ‘in the now’ and may find it very difficult to engage in discussion about a theoretical future. This means that effort to establish feelings about end of life may have to be inferred.

People with dementia may use expressions such as: ‘It’s awful’ or ‘There is nothing left’ or ‘I’m angry’ when asked how they are feeling and this can be indicative. Others will answer ‘I’m fine’ or ‘I feel Ok’ or ‘Very well’ to the same question. People who rail over a particular episode or restriction (losing their driving licence say, or not being allowed to walk out alone) are very likely to be unhappy about their general situation and simply using that point to express this unhappiness and anger. In contrast some people seem to passively accept help from their carer, be amused at or simply unaware of difficulties when answering memory questions and give upbeat answers to questions about their daily living abilities. These differences in behaviour give us valuable clues as to how worthwhile people may find their present lives.

When the End Comes

For those with dementia, the final days of life often come in an unexpected manner. We would all like to imagine a final peaceful ‘drawing to a close’ of life perhaps surrounded by loved ones, well cared for and pain free. The actualities can be quite different. Perhaps a fall or an infection is followed by an emergency admission to hospital and a fast deterioration. Sometimes residential care homes are so worried about possible accusations of neglect or mismanagement that residents at the end of their life are admitted to hospital instead of being cared for in the surroundings they are used to. There may not be time to consider wishes and advanced plans in these circumstances although where these have been discussed and recorded it is more likely that they will be adhered to. Hospitals are generally bad places to die (they are designed to care for and cure) and privacy and peace and calm are rarely obtained there. The Alzheimer’s Society publication My Life Until The End – Dying Well With Dementia notes that ‘care of patients in hospital is still largely crisis driven which means that end of life care can often be poor (National Confidential Enquiry into Patient Outcome and Death 2012)’ Nevertheless, my experience is that families who have discussed end of life and who have planned and considered ahead often feel more comfortable about events leading up to death even if things have not turned out the way they planned.

(Adapted from The ‘D’ Word – Rethinking Dementia by Jordan and Collins)