Dementia has been in the headlines in Wales recently for all the wrong reasons.
‘Institutional abuse’ and ‘people with dementia treated like animals in a zoo’ have been the sound-bites leading the Wales news night after night. The Ockenden report on the mental health unit for people with dementia at Glan Clwyd Hospital, Rhyl, makes uncomfortable reading. In common with the Andrews report on care of older people in general hospitals in South Wales, it highlights a failure to establish good, collaborative relationships with families, in order to provide the best care for people with dementia.
There have been two major announcements of additional funding for dementia services made by the Health Minister, Mark Drakeford, in April and June 2015 and they are very much to be welcomed. Without more detailed information regarding how the funding will be spent, it is difficult to comment on how effective these injections of cash will prove to be, but a strong recommendation should be that both the spending and its effects should be carefully monitored.
The nature of dementia and the scale of numbers of people affected – both those with the condition and those providing care, families, friends and paid carers – means that no single measure will be enough, and a wide range of areas will need attention. Assembly members are due to debate dementia care in the Senedd on June 17yj 2015. Here are some additional areas that may be worthy of consideration in moving on positively and building on the good practice that does exist:
Memory Clinics and increased diagnosis rates
The aim of increasing diagnosis rates will require that more people who may be developing a dementia will need to be carefully assessed in a memory clinic or similar service. Only a proportion of those referred to Memory Clinics receive a diagnosis of dementia, and so there will need to be a substantial number of assessments carried out in order to increase the diagnosis rate. Diagnosing early dementia is a skilled task, and often requires repeated assessments for confirmation. The national Memory Clinic Audit suggested that additional resources for memory clinics would be required to manage this increased work-load. It is not clear that this has been factored in.
One of the often cited reasons for people not presenting for assessment is the notion that ‘nothing can be done’. In fact, there are a number of evidence-based interventions that can be commenced soon after diagnosis. In Scotland, this has been addressed by a guarantee of 12 months post-diagnostic support. Could this be a useful model for Wales to adopt?
In North Wales, the Dementia RED scheme has been funded through the Regional Collaboration Fund by the six local authorities as part of their ‘Inspiring Action’ project, to increase availability of information and sign-posting in primary care practices; the service provider is the Alzheimer’s Society, who are training and supporting volunteers to be information providers. Could this be a scheme that could be extended and continued if shown to be feasible and effective?
The NHS provides only a small proportion of the total care provision for people with dementia (accounting for £4.3 billion across the UK) with over twice as much spent on social care (£10.3 billion across the UK – Alzheimer’s Society report ‘Dementia UK second edition). What social care initiatives are planned to support people with dementia and their families? Home care and day-time activities are especially important for many; the difficulties of short visits and personnel changes are well known – what plans are there to enhance the provision of care in the person’s home?
NHS in-patient wards
The funding for activities in in-patient units is welcome and needed, and there is a case for such provision in both general hospital wards and mental health units for people with dementia. There is increasing evidence that a variety of arts-based activities, including music and visual arts, may be especially helpful with people with all stages of dementia, and increased investment in this domain would be a valuable addition, in hospitals and community settings.
Recent reports have highlighted a breakdown in trust and communication between families of people with dementia and certain hospital wards, both in relation to mental health and general hospital wards. Working in partnership with relatives was a key principle of the NHS Quality Improvement Programme for people with dementia, 1000 Lives plus, and it was recommended in the actions for both mental health in-patient wards and general hospital wards that regular feedback surveys of relatives’ views and experiences of hospital care be carried out. This would be an effective way of signalling the importance of relatives’ perspectives and involvement, and could be made a requirement rather than a recommendation.
Challenging behaviour teams
Reducing the use of anti-psychotic medication has been a key driver in dementia care services across the UK, and is relevant in hospital settings, care homes and the community. Simply removing the medication is not enough in itself – staff and carers need support and skills in responding to the variety of difficulties that have led in the past to these drugs being prescribed, not least the distress experienced by some people with dementia. In England, there are examples of highly skilled challenging behaviour teams (NHS provided, often led by clinical psychologists), who can work with people with dementia wherever they are living, helping those providing care to assess the person’s needs and respond in a holistic way to the difficulties experienced. Recently, one health board has been exploring this model, and held workshops led by a team from England. Is this a model that could be expanded across Wales, providing support to family carers and to the care home sector?
Many of the environments in which people with dementia receive care are far from ‘dementia friendly’, including many general hospital wards and care homes. In North Wales, the ‘Inspiring Action’ project, a collaboration between the 6 local authorities, BCUHB and Bangor University has shown that small amounts of funding can lead to significant environmental improvements, especially where staff, families and people with dementia work together to make changes that enhance quality of life. This again is a scheme that could be valuably extended and developed.
Professor Bob Woods
Dementia Services Development Centre Wales
11th June 2015
Not so hidden…
A cold, wet January Friday evening in North Wales. Surely these teenagers must have better things to do? It’s an evening about dementia, and they have brought their parents, their friends, their teachers to join with a motley crew of health and care professionals and the odd researcher. They have a story to tell, a story that brings inspiration and hope to the unlikely setting of the care home. These 16 young people, pupils in Year 10 at Ysgol Tryfan, have spent a month making music in two care homes, under the expert guidance of a professional musician, Manon Llwyd. They share some of the music they played – a wide ranging feast from Elvis to the classics to self-penned pieces to ‘Calon Lân’. They talk about their experiences, how they saw the years fall away from the residents as they engaged with the music, coming alive, seeing through the mask of dementia to the person beneath. It’s the lads who talk about the emotional impact, how they have grown and learned through the experience. And we believe them! The truth of their words and their music is self-evident but we also have the benefit of evidence captured on video by talented film-maker Osian Williams. The responses of the residents are there to see. Some are subtle – a smile, mouthing the words, tapping to the beat. Some are dramatic – the man playing skiffle bass on his walking stick, the dancer moving in time. And we are all moved by the young man serenading the lady isolated in her room, looking frail and drawn, playing Elvis’s ‘Love me tender’; her eyes light up; he thanks her for listening; she thanks him for playing; she says she used to sing in a choir…. In that interaction we bear witness to the power of relationship-centred care. We learned a lot that evening. We saw the power of music and the power of bringing the generations together in creating a dementia supportive community. We were reminded that if music is about reminiscence, for many of our current care home residents that is as likely to be rock and roll, the Beatles and the Stones as it is the old hymns. Perhaps most of all, we saw that the best way of tackling our fear of dementia, our dread of care homes, is to bring them to the foreground, and recognising that in this part of life, as in every other, humanity and relationship really can make a difference. We at DSDC Wales were proud to be part of this project, with Joan Woods, our training officer providing a preparatory dementia awareness session for the young people beforehand, and we are looking forward to many more such evenings as PONTIO continues with its dementia and creativity strand.
Note: ‘Hidden Corners 2’ was a music residency under the auspices of Bangor University’s PONTIO project (www.pontio.co.uk) (artistic director: Elen ap Robert). Dr Gwawr Ifan is researching the impact of the project on the young people involved.