Jef Smith looks at the end of life for a dementia sufferer, and the delicate conversations care workers will have about end-of-life wishes and preferences.

People who develop dementia face a great deal of sadness in the course of the disease’s progression. To begin with, there comes the time when the initial symptoms have to be recognised as having sufficient significance that they can no longer be brushed off as the absent-mindedness of old age.

A great deal of attention has been given to the next step: the formal announcement of the diagnosis, a communication which is painful, possibly traumatic, even if it has been long expected, and one frequently not well handled by professionals.

What follows in the best organised of cases is the candid and orderly planning for a life which will be effectively shutting down; often, alas, it all goes much less straightforwardly, the illness becoming a confused sequence of half-thought-through decisions and sudden unprepared-for crises.

The progression of dementia varies between individuals in ways still not fully understood, so the points of particular tension are difficult to predict accurately. Inevitably there will be a gradual recognition, by carers if not by the person themselves, of the loss of particular faculties: the ability to cope with daily tasks alone, the capacity to go out unattended, the ability to recognise once familiar faces and experiences, the slowing down of communication skills, and in due course the body’s failure to perform even the simplest functions unaided. Along that painful line inevitably come the various encounters with health and social care services — perhaps some medication, or assistance from a domiciliary care agency, or eventually admission to residential care.

For most dementia sufferers and their families and friends, probably the most painful period comes towards the very end of life. Dementia is a terminal illness so anyone who is diagnosed knows that they will die of the disease unless something else kills them first. Not a cheerful message. Worse, what actually causes death from dementia is a literal termination of some vital physical function, the body effectively forgetting how to breathe, digest food or swallow, so death is rarely pleasant.

For people caring for a dementia sufferer, whether a family carer or a professional care worker, talking about what is going to happen presents serious difficulties. For residential care workers, the problems are made worse by the fact that residents with dementia often enter a home only in the very late stage of the disease, by which time their ability to communicate conventionally has already severely diminished.

Difficult conversations for dementia

The National Council for Palliative Care (NCPC) recognised these issues in a 2011 publication, with the very honest title Difficult Conversations for Dementia. This short booklet, based on conversations with about 50 sufferers, as well as carers and former carers, has the objective of helping to open up conversations about end-of-life wishes and preferences.

The starting point is that people facing death have a clear right to express their views about how they wish to handle the period of death’s approach and death itself. Though many, probably most, find it difficult to broach such sensitive matters, it is doubly tragic if they are not even given this opportunity because of the embarrassment of those looking after them.

The first question to be posed is whose responsibility it is to initiate such tricky dialogues. It would be easy to say that we should always wait for the person with dementia themselves to open up on their concerns, and this seems to respect service users’ right to control their own lives. But this simplifies a more complex process in which users face not only their own reservations and fears but also their apprehensions about worrying others, especially those near and dear to them.

There are, however, many ways in which a care worker can gently prompt a service user, making it clear that it is perfectly appropriate to enter into conversations about the disease and the life decisions its progression imposes. Particular responsibilities lie with care agencies in instances where a person is living alone or where there is no sign of anyone else close enough to carry the user’s confidence.

Talking about an illness is not always good — that would be too easy — but it is often valuable for someone with dementia, or for a family member with caring responsibilities. To be able to share their concerns can lessen anxiety, both by simply relieving the pressure to keep worries to oneself and by accessing important information about what can be done. Fear feeds on ignorance, and most dementia sufferers and their carers are encountering questions about the illness for the first time and with little pre-knowledge.

Where a care worker is not themselves able to answer queries, they may be able, with the client’s permission, to make contact with a source of greater expertise. It should not be assumed, however, that everyone with knowledge also has the courage and tact to communicate it. At a recent NCPC conference, people in the early stages of dementia along with their carers acted out scenes, many based on personal experience, illustrating just such professional evasiveness, many featuring doctors, social workers and nurses who should know better.

At a purely practical level, however, it is important that those caring for people with dementia, whether family, friends or care workers, know the views of those they are helping. And for a sick person to be confident that their wishes regarding the sort of care they will receive have been satisfactorily communicated and will be respected and acted on will usually in itself provide considerable reassurance. People in their own homes may never before have experienced a death in the close family, so have little experience to call on in the absence of explicit undertakings. Clearing the ground in this way often makes it possible, as the Difficult Conversations pamphlet describes it, “to get on with living life now”.

Difficult Conversations has a handy checklist of the topics that might be covered. These include knowing what to expect from the disease’s progression, managing financial matters, how to obtain more help when it’s needed and where this might take place, preferences about being cared for, dealing with emergencies, the availability of pain relief and practical matters like funeral arrangements and possible organ donations. All of these are important, though not all will feature in all cases.

The right time to talk

The timing of such delicate conversations is naturally important. A general rule is that the earlier difficult issues can be addressed after diagnosis the better. Hearing one has an incurable, progressive and ultimately terminal illness naturally provokes great anxieties, but it also opens up a chance to talk and plan which may pass if not used promptly.

A care worker will, however, need to wait for an appropriate opportunity, which may be an anniversary, a sudden development of the illness, a change in the pattern of care, or simply a shift in the dementia sufferer’s mood. The rule is to be open to the possibility when it arises and not to evade issues which a client has been afraid enough or bold enough to raise. Dementia attacks the brain and interferes with mental processes, so time should not be lost if rational decisions are to be taken while the person still has capacity.

Some decisions, about for example granting a relative power of attorney or how a person’s body is to be handled after death, may be taken in a formal setting and recorded accordingly. Others, such as preferences about care, can be communicated during what may seem like quite casual or everyday conversations, but may carry equal importance.

Care agencies should have systems in place, generally of course incorporated into care planning arrangements, for noting such wishes and for assuring clients that they have not been missed. Nor are decisions, however formally or informally taken, necessarily for all time; people change their minds, as circumstances change or as their feelings develop.

So although some key discussions may take place as soon as possible after the disease is identified, the responsibility of care workers for keeping channels of communication open do not begin and end then.

Government policy

Sadly, official guidance on these matters from the Department of Health and others is significantly weak on social care practice. The Government’s Dementia Care Strategy, updated in 2011, makes scant references to domiciliary care despite the evidence of how many people with dementia are cared for at home and therefore probably have home care support at some stage. Nor are national policies on end of life and dementia well co-ordinated, ministerial attention often seeming to focus on one or the other but rarely both together.

The NCPC addressed some of these deficiencies in its 2009 report Out of the Shadows: End of Life Care for People with Dementia, calling for closer policy co-ordination, increased public awareness, tighter planning and commissioning mechanisms to include the whole range of health and social care agencies, better data collection, more systematic research, and of course sustainable funding. Most important of all, it demanded that the voice of people with dementia and their carers be consistently heard and their views incorporated into policies.

Care workers can make a vital contribution to this process, provided that they themselves feel confident to enter into the conversations death and dementia provoke.

Last reviewed 4 July 2012