Last reviewed 30 August 2013
Try, for a start, this short test. In which years were the following launched: the National Dementia Strategy, the Prime Minister’s Dementia Challenge, and the Dementia Care and Support Compact? The answers are 2009 (but revised in 2010), 2012, and 2013. If you’re feeling smug about getting all of the answers right, now summarise in under 20 words what each of them promised, states Jef Smith.
Over the last few months I have been playing this game with a range of people involved with dementia and have to record that few pass with flying colours. Even people who know the dates flounder on what the various initiatives were intended to achieve, generally managing not much more than general statements that things are somehow going to get better.
My criticism, of course, is not of the people I have persuaded into taking my trick exam, but of governments whose frenetic initiatives do not seem to outlast for long the self-serving announcements of their launch.
In addition to the above, NHS England has set out the ambition that two-thirds of people with dementia should have a diagnosis by 2015, Public Health England named dementia as one of its “high-level priorities” for 2013/14, and the National Institute for Health and Care Excellence (NICE) has published its dementia care standards. You could be forgiven for thinking that, in recent years, we have had too many words on dementia and rather too little actual action.
It is readily apparent to anyone working in residential care that the number of residents with dementia is rising steadily. There are currently about three-quarters of a million people with dementia in the UK, and although two-thirds of these still live in their own homes or with relatives, a very large percentage of dementia sufferers end their days being professionally cared for.
Neither the spouse of Iris Murdoch nor the children of Lady Thatcher, to take two high-profile examples, could cope with the pressure of caring for their relative as their end of life approached. In most instances, it is clear that, in the later stages of the disease when it is most distressing and most difficult to handle, only specialised, expertise environments can respond to these extremely challenging pressures.
Integration or separation?
It follows that an important question for residential care is whether at least some homes should limit their intake to people with dementia, on the grounds that only in this way can the particular services this group require be effectively delivered. Many such homes now exist and I recently spent a day in one of them to talk with staff, residents and relatives to assess the claim.
I came away very impressed, but I still recognise the strength of argument for continued integration, which I have also heard frequently stated. Roughly summarised, those arguments are that separation increases the condition’s stigma, that people with dementia can benefit from an environment that enables them to associate with people without the disease, whatever other disabilities they may have, and that dementia is now so common among elderly people that virtually any home will inevitably contain some people in at least the early stages of the disease.
The stigma attached to dementia remains high, and with good reason. Not only is Alzheimer’s disease — along with the associated dementias — a condition that is usually terminal, it is one that progressively robs those who have it of all of their faculties. This means that there is little or no opportunity for the displays of courage and dignity that, for example, cancer often permits.
Older people are generally reluctant to acknowledge that memory loss and mild disorientation are attributable to dementia rather than to general ageing, and for this reason many hesitate from seeking a firm diagnosis, preferring to live with hope, albeit tinged with fear, than under the confirmed sentence of a miserable decline towards death. The fact that diagnosis can never be certain from early symptoms, and that being diagnosed leads to no guarantees of help, are further disincentives to fully facing up to a disagreeable prospect.
When I mentioned to one head of home that the Commission for Quality and Innovation is proposing to reward hospitals that offer dementia risk assessments to all people over 75 on admission, her caustic comment was, “That’ll freak them out!”
Relatives customarily share their loved ones’ reservations. They know, or quickly find out, that they face a future of exhausting and painful caring, followed perhaps by the guilt and expense of handing over care to professionals. A home that accepts people with dementia also experiences this stigma.
Whether their also admitting some mentally fitter, older people means that the stigma is diluted or effectively spreads to all residents and to the sector as a whole, is a moot point. Certainly, residents in homes where everyone is still in possession of their cognitive faculties have been known to boast of that fact, illustrating perhaps their natural desire not to be regarded with the mixture of pity and rejection that society metes out to their less fortunate fellow citizens.
The example of food service
Staff at dementia-specific homes I have visited counter these arguments by pointing out that some aspects of their service would not suit older people without dementia.
For example, in one home meals are almost always served while residents remain in the sitting room, many in the specially designed supportive chairs from which they can only be moved with serious discomfort. People are in a circle, to permit visual contact as if at a table, and staff sit amongst them, providing the encouragement and assistance that is almost always needed.
The arrangement, which only a few years ago would have been condemned by the then-regulator as wholly destructive of a normal dining experience, was warmly commended in the home’s latest CQC inspection report as ensuring that food was warm when consumed, that people could be assisted in “a gentle and kind manner”, and that the practice enhanced the social elements of eating. “The client group dictate their care,” said the home’s manager, adding that the point was to create “a more liberating and friendly atmosphere”.
However, can less disabled residents help those with cognitive deterioration, as the advocates of integration sometimes argue? Staff and relatives I have met point out that the people with dementia who reach residential care are not a cross-section of those with the disease, but are generally close to the last stages of life. Residents without dementia will also tend to have severe disabilities of other sorts, limiting their own capacity.
It has to be acknowledged, too, that the behaviour of people in the later stages of dementia is often quite antisocial. Is it fair that fitter residents should have to share their living space with someone who, for example, shouts or exposes themselves? Such behaviour can also annoy other dementia sufferers: in one home, I watched a woman pacing about in an agitated way, to the manifest irritation of another resident who was trying to communicate with me.
Totally segregating “wanderers”, a derogatory term that the head of that home strongly disapproves of despite its still being regularly used by the Department of Health, is clearly impossible. In the safety of a contained environment and with staff levels that allow for personalised interventions when challenging behavior occurs, residents who are obviously troubled or even aggressive can be humanely contained and their disturbance to others minimised. Not every home has a sensory stimulation room, and some regard even the equipment as unhelpful, finding, as one manager expressed, that they can achieve “equally good results from just the human touch”.
The key is clearly in developing flexible reactions to individual circumstances. Again, not all homes can afford a full-time activities organiser, but it is generally useful to designate one staff member as the social co-ordinator.
Combined with comprehensive information gathering on admission and diligent care planning throughout each resident’s stay — not just a care plan drawn up at the beginning and never looked at again or revised — care and activity can be personalised. “If you care about someone and respect the person they have been, carry that into their everyday life now; that is what gets the best result,” said one insightful manager.
The homes specialising in dementia I have seen recently make a particular merit of their staff’s training. Combined with the nurses who often provide the leadership in such homes, the quality of staff performance really does set them aside in the sensitivity of the care they can offer.
Nursing has not been enjoying good press lately, from Private Eye’s regular “Fallen Angels” cartoon to the scandals of hospitals such as Mid Staffs, but the nurses I have met on these visits have provided exemplary examples to the less well-qualified care workers they direct and supervise.
Whether it is in the sensitivity of end-of-life care, the flexibility in relating to relatives, or the capacity to communicate on equal terms with specialists such as speech therapists or community psychiatrists, the best nurses bring to dementia care an impressive authority and professionalism.
For example, on the critical issue of medication, a confident nurse can stand up to a complacent GP, ensuring that doses are appropriate and that the dangerous medicines once casually prescribed as a method of restraint are effectively outlawed.
It must be remembered that dementia is not, in itself, a single cause of death, but it certainly does lead to the sort of progressive organ and system failure that eventually proves fatal. Coping with the variety of conditions that dementia brings with it as general health deteriorates is therefore a complex and skilled nursing task.
One relative I met whose father was clearly close to death expressed to me, despite her sadness, the confidence that the home would manage effectively the pain of someone dying from cancer. Happily, her experience is not untypical. In the same home, the manager insisted that the qualifications and training of her staff could ensure that illnesses other than dementia are not missed, averting the insidious process by which people diagnosed with one illness miss out on other necessary treatments. The sole argument that I found persuasive in favour of not specialising in dementia care is that dementia is now so pervasive among the elderly that almost any home, whatever its admissions criteria, will find itself looking after at least some people with the disease.
In October 2012, the Department of Health announced a fund of £50 million dedicated to creating care environments specific to people with dementia. Examples of how the money might be spent include sensory stimulation gear, reminiscence aids, adaptations to outdoor space, controlled mood lighting and better resident-oriented signage. Take me to any home in the country, whether dementia-specific or generalist, that could not use such an investment.