Dementia awareness week starts tomorrow on 19th May. When I think about ‘dementia’, I don’t think about government initiatives and new exciting ways to ‘raise awareness’. Raising awareness is good but only if we are raising awareness with a reason. Awareness isn’t enough. I’m an avowed cynic of the government’s ‘Dementia Challenge’ for many reasons but not least, the name. Dementia is not and shouldn’t be a ‘challenge’ any more than we need a ‘broken leg’ challenge or, to put it perhaps more honestly, an ‘age’ challenge. Fundamentally the language of ‘fighting’ dementia is embedded in an ageism that doesn’t recognise that dementia is a process and a range of symptoms that can look very different from person to person, family to family and society to society.
When I think about ‘dementia’, I think about the people I’ve had the privilege to work alongside as they experienced challenges of the systems that we have created to make experiencing illness more of a challenge. The ‘challenge’ isn’t dementia. The ‘challenge’ isn’t age. The ‘challenge’ if we want to use that language, is one of a health and social care system that stigmatises and isolates. That creates language and rhetoric around ‘choice’ and ‘involvement’ but rarely delivers or delivers in inequitable manners which further increase the challenges to those who have to navigate systems.
I think about Rose and Maisie. George and Bill. I think of Dorothy and Lily. I think their families and those of them who didn’t have families. I think of the different types of dementias and memory impairments that have affected the people I have met and their famillies. Alzheimer’s, most commonly, but also vascular, Lewy Bodies, Korsakoff’s, Picks and the many that have names I can’t remember. I also think about the calls for more dementia nurses, more Admiral nurses, which I am sure is a good thing. But I want to draw out a call for more dementia social workers because I think, if there’s a role that can be played, it has to move into the territory that social work has, in the crux between medical and social systems.
I worked in an older adults mental health team before ‘memory clinics’ came into being. Memory clinics are good. They are good for diagnosis. I argued for a social worker or two in our memory clinic but there was no funding for it. It wasn’t seen to be ‘necessary’. No, we need nurses because nurses can follow up the clinics. Nurses can monitor the medication. We don’t want to pick up care management responsibility for the group of people who would come into memory services because that is the local authority’s job. These were the responses I had. And there’s the rub. There was and perhaps, still is, the opportunity for single care coordinators to link between health and social care and if any are best placed for straddling that divide, it is the mental health social worker who specialises in dementia.
While I worked in a mental health trust, I had good working relationships with the multidisciplinary team but my social work background gave me an additional role in terms of managing, developing and advocating for those who needed social care support as well. Amid all the calls for more support and research in dementia, we see little call for more social workers who specialise in dementia care, and I think we are missing a trick. Of course, I’m biased. It was an area I loved with a passion. I do think that if there’s one area in mental health services that we can, and should, push against the removal of social workers, it is in the older adults services and dementia particularly.
Working in dementia services, I worked a lot with families, sometimes at great distances because they did not live near their loved ones. We ensured that the information was there to guide people through the systems – when we had it anyway. We worked particularly with people who ‘didn’t engage’ with services (I hate that term) because they didn’t understand or acknowledge their diagnoses and often the work we did would be very slow at first. A knock on the door. A few words and a smile. We kept going, kept going, until our faces became familiar. We had the opportunity to work in different ways and to build up relationships. I was lucky with my managers. We had different criteria for admission into our services than the adult teams. When I visited some people, two/three times a week – or undertook visits to family members to offer an ear to listen – even if there was little practical support I could give, it felt like time well-spent but it might not have been exactly ‘working to the service model’.
If I could design a model for dementia care, it would have social workers at the heart of it. There would be multi-disciplinary teams of course, but they would include district nurses as well as community psychiatric nurses. We’d have some specialist OTs, medical covers and social workers would be the care coordinators – straddling the balance between health and social care systems. The support would be there for families and friends as well as those with none. We would have time to put together support plans which were able to ensure that people’s wishes were captured as soon as possible and work on advance directives and lasting powers of attorney from the first point of contact. But if people didn’t want to discuss those things and just wanted to ‘be’ – we can do that too.
Social work could be a key to unlocking integrated dementia support systems and as a profession, we have to ensure that our voice is not lost. The desire to medicalise dementia is a result of a nonsensical funding system where health is funded through the NHS as free at the point of delivery whereas social care is means-tested. This means there are many interests regarding freezing social care and social work out of dementia services. People don’t want to pay for services when they could be delivered free. This shouldn’t though, drive policy in the future and without social care sitting alongside nursing, we risk losing the heart of support systems which need to reflect social situations as much as medical needs. It’s imperative that the voice of social care remains at the heart of dementia care and dementia services.
Maybe we need some ‘Admiral’ type Social Workers out there. Meanwhile, for dementia awareness week, we should examine what we want dementia services to look like and ask people who have dementia to tell us what they want from services rather than making decisions around what we think is best. I think social work and social work values are particularly well-positioned to seek and respond to those voices. As for awareness, it’s better than lack of awareness but as we move into an ‘awareness’ week, it’s worth thinking – why do we want to become aware and what are we going to do when we are aware. Awareness without action or change, well, it’s not much better than a lack of awareness.