Final Choices' end of life care expert Mary Jordan considers how families of people with dementia come to terms with the progression of the disease and saying goodbye.
People who have advanced dementia will gradually lose all conscious control over their bodily abilities – for example they will forget how to use a knife and fork or how to manipulate a toothbrush to clean their teeth. As the disease progresses people lose their unconscious abilities too – they forget how to swallow for example. The loss tends to happen in the same progression as control is gained. So, for example a baby learns to hold up its head first and then to manipulate its hands and fingers and finally to control the legs and to use them to walk. So we often see a person with advanced dementia lose control over their legs first becoming subject to regular falls, having to use a walking aid and later becoming unable to walk at all. In the last stages of dementia someone may be unable to sit up and unable to swallow solid food – we might say that they are ‘as helpless as a baby’.
The progressive loss of function is acutely distressing to family and carers. In the last article we discussed how a carer might assist someone in early stage dementia to make their end of life wishes known. Clearly by these later stages there is no possibility of discussing wishes or plans with the person who has dementia but it can still be sensible and perhaps therapeutic for family to talk together about the approaching end of life and to agree by whom and how any decisions about treatment or withholding of treatment might be made.
People with dementia who are in a residential care home at this stage in the disease should have end of life care decisions recorded on their care plan. Even so families may have to be very clear and very insistent if they do not want their loved one to be taken off to hospital at the first signs of approaching death. Most people express a wish to die at home and for people living in residential care their home (meaning the things and people who are familiar to them) is the care home. If they were able to express a wish they would almost certainly prefer to be looked after in their last moments by familiar carers than by strange nurses and care assistants however kind and well-meaning these might be. Care homes vary in their ethos on end of life care and it is worth having a discussion about this before your relative is admitted to the home.
Arrange extra support
A few people with late stage dementia are still living in the family home with a life partner or a son or daughter or perhaps with a professional live-in carer. It is unlikely that relatives will be managing without professional help of some kind at this stage and it is worth having a discussion with your professional helpers to see if they feel able to cope with the end of life, and to arrange ahead any extra nursing care that may be needed (usually this will be in connection with medication or intravenous feeding as good care agencies train their staff to manage mechanical aids like catheters and hoists).
Experienced carers and health care staff will usually be aware of approaching end of life and will be able to alert family so that anyone who wants to do so will have the chance to make their goodbyes. Relatives and friends though, should be aware that most people with dementia will have no awareness by this stage – they are likely to be non-responsive even if they are conscious.
Therefore these parting visits are of most importance for the family care givers and may give some peace of mind to those who have borne the burden and distress of caring perhaps for several years.
Co-author of: End of Life, the Essential Guide to Caring (Hammersmith Press) and The essential Guide to Life After Bereavement (JKP)