Last reviewed 15 June 2015

How do care workers help those with dementia approach the last phase of their lives? Jef Smith reports.

Death and dementia. No two words so succinctly encapsulate our age’s most feared taboos, and with good reason. Fear of death is certainly not new and needs no explanation. Fear of dementia, however, is a uniquely modern phenomenon since increased longevity exponentially multiplies the numbers of those at risk.

But how do those whose cognitive capacities are ravaged by dementia or other long term mental disorders experience the imminence of death? That truly terrifying question prompts in the rest of us only anxious guesses, and for no group are these concerns more pressing than for the staff of organisations providing social care.

Whether or not an agency claims to specialise in dementia care, it is likely that a high proportion of its service users as they approach the last phase of life will do so with some sort of mental health diagnosis, most commonly dementia. Even if dementia is not identified as the cause of death, it may still cast a heavy shadow over their last days. Just how do care workers cope with this literally dreadful responsibility?

Talking about Death

The best first step for all of us would be to get beyond the widespread feelings of fear which talking about death customarily engenders, and some care-providing organisations have had a good deal of success in this respect. I recently saw an article in a provider’s house journal in which one seriously ill service user described the preparations for her death that she had made with the help of care staff, frankly accepting that “I don’t know how long I have to live”.

I later met the author and we talked, sitting together on a garden bench inscribed to the memory of a friend of hers, a fellow user of support services, who had died a few year ago. That’s the spirit, I thought, but I realised that her courage had only been made possible by the attitude of her care workers.

Similarly, I have several conversations with relatives of people receiving various social care services. Though they often speak emotionally of the sometimes troubled history of their families and of their recurring feelings of guilt and inadequacy about not being able to provide full time care themselves, their ability to discuss dying with relative ease clearly derives from the openness with which the issue has been treated by the professionals caring for their loved ones.

This year’s Dying Matters Awareness week held in May, an event which, its organisers claim, reached half a million people, took up this point. Its central message was the three word instruction “Talk, Plan, Live”, each word headlining a set of suggestions set out on a post card addressed to an older person. “Talk” dealt with ways to start conversations about dying and who such dialogue might involve. “Plan” set out the practical steps to be taken to have end-of-life wishes accommodated. “Live” was a reminder that sorting out the details helps to make it possible to live life to the full with peace of mind.

But is such a sequence of steps, each dependent on a mature understanding of what is happening and about to happen, realistic with people suffering from functional and cognitive deterioration? Communicating about dying, and often associated issues such as pain, fear, faith and anger, is greatly complicated when the person you are trying to help has the communication difficulties which we know dementia brings in its train.

Gold Standard Framework

Many providers now use the Gold Standard Framework (GSF), a system of staff training and accreditation operating across the health and social care spectrum with specialised programmes of workshops, distance learning and other teaching and good practice aids. It is recognised by Skills for Care and there are options for candidates to work towards university academic credits.

GSF has worked with a wide range of care providers, and has made a significant contribution to, for example, the statistics for people dying in their own homes as opposed to death in hospital, a good measure of the quality of domiciliary palliative care. I am not sure that the word “gold” in the scheme’s title was intended for this purpose, but the initials are now said to stand for Good communication, Ongoing assessment of needs, Living life to the full, and Dying with dignity — a pretty fair summary of GSF’s objectives.

A key focus of GSF’s Dementia Care Programme is “to enable people living with dementia to live well and die well in their usual place of residence, improving knowledge and awareness of staff and thereby reducing crises”. It has four modules, concentrating respectively on Awareness, Pain and distress, Communication, and Reduced hospitalisation.

Many of the sub-themes will be familiar from other areas of practice but they achieve a unique importance in relation to dementia. Among them are person-centred care, maintaining dignity, recognising masked pain, better listening, advanced care planning, support for carers, and improved cross-boundary communication. The four modules can be taken over a period of three to four months, trainers brought into a home if there are sufficient participants to justify the cost, or trainees attending a regional centre for the directly taught parts of the course.

Other systems

GSF is only one of a number of systems which care providers can operate to achieve quality end-of-life care for their clients. Until a few years ago, the leader in the field was probably the Liverpool Care Pathway (LCP), a scheme developed for Merseyside hospices but subsequently adapted for use across the whole range of health and social care settings.

During 2012, however, there were a string of complaints from the relatives of dying people about the way in which the Pathway was being used. A subsequent assessment found that “the LCP had come to be regarded as a generic tool and used as a tick box exercise”, and an independent, government-commissioned review conducted by Baroness Neuberger came to much the same conclusion. Rather unfairly in my view, LCP was completely dishonoured and effectively banned from further use.

A consortium of 21 national organisations called The Leadership Alliance for the Care of Dying People subsequently published a report in June 2014, called One Chance to Get It Right, which outlined “the approach to caring for dying people that health and social care staff caring for dying people in England should adopt in future”. LCP had been criticised for promoting a standard response to dying which failed to take differing individual needs into account — what Care Minister Norman Lamb described as “slavishly following a process without care or compassion”.

Accordingly, for a while, policy makers insisted that LCP should be replaced with “an individual approach to end-of-life care for each patient”. This of course ignores the fact that good practice has many generalisable features, and in due course, quite properly, new protocols and systems began to emerge.

One of these, which is now widely used, is the “six step end-of-care pathway”, which takes practitioners from discussions of end of life and assessment, care planning and review, through co-ordination of care, delivery of high quality services, and care in the last days, to the final step, care after death. Each step has matching outcomes, from enabling users, families and carers to engage in honest and open conversations to ensuring that the emotional and practical needs of surviving family members are addressed.

For any provider still looking for aids to their systems for dealing with dying, there are plenty of easily adaptable examples to hand. Among these is a form called Preferred Priorities for Care, a document I came across recently on a visit to St Helens. This was originally prepared 10 years ago by the Lancashire and South Cumbria Cancer Network, it was subsequently substantially revised, and it is now endorsed by the NHS End of Life Care programme. The form invites anyone facing death — all of us? — to confront questions the answers to which define our preferences and priorities. (Not for the first time with a health service document, I found the Easy read version, with its straightforward language and neat graphics, much more accessible.)

It is a truism to say that personalised planning is at the centre of good end-of-life care. One client I recently met had what is known as sundown syndrome — her behaviour tends to become more disturbed and aggressive with the onset of darkness — but this has been somewhat alleviated by the installation of a sun ray lamp.

For many dementia sufferers, meaningful help depends on what some might see as even simpler factors, notably the capacity among staff to understand what could be thought of as rather bizarre communications. A man repeatedly slapping his own face, for example, was eventually found by an attentive worker to be suffering from severe toothache. Given his severely limited speech, his attempt to convey his pain is by no means so eccentric when seen and interpreted by an acute observer.

The challenge for a domiciliary care agency aiming for the very best in end-of-life care for dementia sufferers is to seek out and operationalise the systems of staff training, quality accreditation and care planning which incorporate best practice, but to withstand the slide into a culture of unthinking form-filling and box-ticking which killed off the Liverpool Care Pathway. Pathways and procedures have their place but they need the constant refreshment of personalisation to stay, as it were, alive and fit for purpose.