Monday 30 March 2015

Reablement for people with dementia

As we approach Easter, a time associated with rebirth, new life, possibility and opportunity, I have found myself thinking about how this correlates with the experience of living with dementia. Historically, a diagnosis of dementia has been seen as a death sentence to endure and suffer, but since that doesn’t tally with how I look back on the years I had with my dad during his dementia, I have become increasingly interested in the concept of reablement.

Reablement is generally associated with helping a person to regain the ability to look after themselves following an illness or injury. You are most likely to see services dedicated to reablement for people who are recovering from trauma (I distinctly remember the wonderfully holistic package of reablement given to my half-brother after he had a road traffic accident), or a stroke, and possibly even for people who are recovering from mental illness or addiction.

I would frame reablement as help to complete essential tasks of daily living, support to pursue hobbies and interests that are mentally and/or physically challenging, and opportunities to grow and develop. For my half-brother, I recall a residential reablement centre he went to after being discharged from hospital where he was supported to look after himself (cooking, laundry, personal care etc), return to participating in the things he enjoyed prior to his accident (hobbies and activities that were important to him), learn new skills, and plan for the future to help him prepare for living independently, getting out and about and returning to employment. He received physiotherapy, occupational therapy, counselling and there were wider family support services.

All of which begs the question, why aren’t the principles of reablement more closely associated with dementia? To put it bluntly, since dementia is a terminal disease, I suspect people with dementia are seen as being unlikely to benefit from a service that supports and encourages independence and autonomy, when traditionally dementia is associated with a degeneration into complete dependence and a loss of voice and identity.

Obviously I’m not questioning the terminal nature of dementia; my dad had vascular dementia on his death certificate. Nor am I suggesting that as dementia progresses a person doesn’t become more dependent -  I know from my dad’s experience that he became totally dependent on 24/7 care, hence why he was in a specialist dementia nursing home for over 8 years.

But behind all of this there are some key variables: 

1.      There is no set pathway for deterioration, everyone experiences this differently and in different time scales. I don’t really support the categorisations of early, middle and late stage dementia – to me these junctures are too specific and not reflective of the fluctuations in the day-to-day life of a person with dementia. Surely aiming to help a person to have the highest level of functioning for as long as possible can only be a good thing?

2.      No matter how advanced a person’s dementia is, there are opportunities for participation in everyday life, it's just that we often don't see these or have time to help them happen. Key examples from my personal experiences are my dad occasionally wanting to take the spoon and feed himself his pureed meal in the last year of his life, or finishing a song in perfect time to the music when he otherwise had virtually no speech. These achievements came about through perseverance, patience and offering encouragement.

3.      We are never going to know what people with dementia are truly capable of if we don’t actually put in the services, like we have for people who experience trauma or stroke, to actually see what is possible. How do we know reablement services aren't just as effective as any of the drugs we currently have , or might have in the future, to treat symptoms or slow down the progression of dementia? Admittedly there have been a few areas of the UK offering reablement to people with dementia, but it certainly isn’t a mainstream service.

Sadly my dad never really experienced any form of official reablement. At the point he was diagnosed with vascular dementia, following ten years of mini strokes and then one much larger stroke, his quality of life and abilities had deteriorated very rapidly. As a family we had been trying to support him but we really didn’t understand what was happening to him, and the health and social care professionals in his life hadn’t been proactive enough to grasp the bull by the horns, diagnose, explain and, crucially, offer dad and us the support we needed.
Enabling dad to have maximum independence, occupation and enjoyment in life was pretty much impossible once he was confined to hospital and then moved into the first of the three care homes he would go on to spend the last nine years of his life in. We had some small victories over the years, largely stumbled upon through pure chance – examples include discovering the power of music therapy, the joy of food and eating and the wonderment of connecting with the natural world – but nothing that really fits how I would interpret reablement if I had the chance to live those 19 years of my dad’s dementia with him again.
My top tips for reablement success for a person with dementia would be:

1.      Offer reablement in the person’s own home - the type of residential centre my half-brother went to isn't going to be the right model for the majority of people with dementia given the confusion and anxiety a new environment could cause. Equally hospitals, however dementia-friendly they are (and the one my dad was in really wasn’t), don’t offer the familiarity, calmness, opportunities for exploration and expression or the personal touch of home.

2.      Involve a multidisciplinary team of professionals, most notably people who are from the allied health professions, all of whom should be specifically trained in dementia and all of whom should take their lead from the person with dementia. Remember, professionals can learn from the person as well as imparting their own knowledge.

3.      Think out of the box. Is there technology that can help? What about the latest guidance on dementia friendly environments, has this been translated to the person’s home? Away from health/social care, are there individuals within the local community who can provide pastoral or occupational support, visiting or enabling the person to get out and about to enjoy hobbies/activities? Going further, can the person be enabled to get involved in community work/volunteering/awareness raising/public speaking etc – there are some fantastic peer support and mentoring services than can encourage such activity for people who feel it is right for them.

4.      Belief in the possibilities of reablement both for the person with dementia and those who are supporting them – be they family members, friends, neighbours or health and social care professionals – is vital. This means moving away from the historical or traditional views of dementia and seeing the exciting possibilities of reablement and how it feeds into living well.

Alongside these tips, do take a look at this page on the SCIE website:
Interestingly from the perspective of the timely diagnosis agenda, reablement fits perfectly with the idea of catching symptoms early and maximising the person’s potential. Currently diagnosis is often just a label and a prescription – reablement offers something more tangible, providing strategies and opportunities to grow into that diagnosis and live well with it. It should be at the heart of good post-diagnostic support, and if it were, those of us who are doubtful of the merits of diagnosing earlier and earlier might see more justification for it if an accurate diagnosis can be made.
Reablement isn’t about giving people with dementia or their families false hope or denying the reality that dementia is still a terminal disease. What reablement offers is the chance to make the best of what we have and do something practical to underpin the message of living well with dementia. Without reablement, I think that there is a very real risk that we give up on people with dementia far too easily.
Until next time...
Beth x

You can follow me on Twitter: @bethyb1886


Monday 16 March 2015

Dehumanisation in hospitals

I have many personal dislikes to language used in relation to older people or people who are living with dementia, but a particular phrase is the subject of this blog mostly because I think it says a huge amount about how the healthcare system sees the very people it is there to serve.

‘Bed blocker’ has become a commonly used phrase to describe a person who is medically fit to leave hospital, but who cannot return to their previous life – perhaps living alone in their own home – due to their personal care and support needs. People who are living with dementia, whether it’s diagnosed or not, are at particularly risk of longer stays in hospital and by default adding the unwanted stigma of being a ‘bed blocker’ to their already stigmatised life.

Such delays in hospital discharge are usually caused by our bloated health and social care systems arguing over who is going to assess, organise, provide and fund an appropriate care package. It is often exacerbated by health and social care professionals failing to communicate between themselves, external care providers, the person - the ‘bed blocker’ - and their family.

What is really lost when we talk about people who are in hospital for longer than they should be is that every ‘bed blocker’ is an individual with a rich life history, a home they are perhaps longing to return to, and immense confusion and frustration at remaining in hospital. No one is more greatly affected than the person who has been labelled a ‘bed blocker’, which is what makes this label all the more offensive.

As a frail older person with dementia in hospital you are largely powerless to decide when you leave, and to some extent, where you might go. Yes, you can discharge yourself, but many people don't have the physical or mental capability to do that, particularly in an environment that strips them of their identity and life skills. They may not be able to find their clothes and organise the transport needed to leave, let alone be able to access their bathroom and bedroom, prepare food and drinks or take medication once they are out of hospital.

The situation is particularly acute for people with dementia because they have increased care and support needs that are very specialised, and with our fragmented health and social care systems it can be difficult to agree, source and fund that specialist provision. The person themselves may not be able to make their own decisions, or possibly could but they don't have access to appropriate advocacy services, and if the person has a family, they aren’t always nearby to provide additional help.

These are older people who are frail and vulnerable, and yet they are seen as being in the way and wasting NHS resources, despite the fact that throughout their working lives they would have helped to fund the NHS. ‘Bed blocking’ has even become an argument for some people who are keen to promote euthanasia, a concept that I’m not sure could be any more dehumanising.

Technically, my dad was a ‘bed blocker’. The two inpatient stays he had whilst waiting for care home placements were lengthy – one stay was three months – and as he became more frail in the last few years of his life, he was admitted to hospital  from his care home with both chest and urine infections. As he was already in the social care system and with funding in place, he did at least have somewhere to be discharged back to, but the care home still had to assess him and agree to have him back.

We were more fortunate than many families whose ageing loved ones yo-yo between hospital and home, struggling in both settings, or who watch their loves ones deteriorating in hospital while they become pawns in funding assessments between health and social care services. Hospitals can be dangerous places for older people who are living with dementia, especially given hospital infection rates and staffing levels. Who would want to lay in a hospital bed day-after-day with only hospital food to eat and with an unbroken night’s sleep an impossible dream – it’s hardly a preferable choice is it?

Yet somehow the term ‘bed blocker’ makes it sound as if the person is actually deliberately blocking the smooth operation of the hospital by outstaying their welcome. It might be a simple term for a hospital manager to illustrate the capacity crisis in their service, or for a journalist looking for a headline grabbing phrase, but it remains about as far away from kindness and compassion as you could possibly get.

So can we ever get away from the term ‘bed blocking’?

Last Wednesday, 11 March, marked NHS Change Day, and although I didn’t personally get involved this year if I’d been creating a campaign it would have been around this issue. The NHS needs to get away from seeing people as a box to tick or a bed to empty. Integration (Joined-up thinking) may be a phrase even more overused than ‘bed blocker’, but I genuinely believe that the answer to many of the challenges the NHS faces with lengthy inpatient stays comes from the availability and funding of social care services.

When the fundamental issues of how and where we provide high quality care and support for frail older people are resolved, we may find we no longer have ‘bed blockers’. In the meantime, let’s stop giving the impression that patients are to blame for being in hospital beds and ditch this dehumanising phrase once and for all.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 2 March 2015

One million friends, but we need specialists too

Like many people who have supported the Dementia Friends initiative, I was delighted to hear the announcement that the target of creating one million Dementia Friends was recently reached.

Dementia Friends is the UK Government's initiative, in partnership with the Alzheimer's Society, to increase basic awareness of dementia within, initially, England but now also in Wales and Scotland. To become a Dementia Friend you undertake training, either in person or online, and are asked to commit to an action as a result of your increased knowledge of dementia. To become a person who delivers the training - a Champion - you complete a one day course and are then equipped with resources to go back to your community and hold face-to-face training sessions.

I trained as a Champion in May 2013, and although I wouldn't say that every aspect of Dementia Friends is perfect, its benefits should be recognised. Increasing dementia awareness, even at the most basic level, is generally a positive step forward. Likewise, giving people something to belong to by giving them a badge, and a real sense of joining a social movement for change is also a positive example to set.
Sporting my Dementia Friends badge
Some of the main problems with Dementia Friends have come from the name itself, which some people have misinterpreted as suggesting that people who become Dementia Friends then go out and befriend random strangers who are living with dementia. Equally, the idea that people are 'trained' gives the impression that this is comprehensive dementia training which replaces other forms of more in-depth, and potentially costly, education.

To be fair to those who have pioneered Dementia Friends, both of these common myths are roundly condemned by the official literature that accompanies the initiative, but never-the-less, I still encounter health and social care organisations who believe that giving their staff Dementia Friends training means they have trained them in dementia care. They have not.

Dementia Friends isn't without its critics, and equally its hardened enthusiasts. I sit somewhere in the middle. I like the basic concept, the positive way it's been embraced by people who have never even thought about dementia, and I am happy to wear my badge. Indeed it goes everywhere with me and has proven to be a great conversation starter.

But where to now? The next target is to create another three million Dementia Friends, which certainly demonstrates ambition, but while we increase the community-wide understanding of dementia, there remains a question mark over how much money is going into the specialist support that is desperately needed.

The training of health and social care professionals is still clearly not at the level it needs to be, and may be many years away from universal tangible improvements, no one really knows. The quality of training in health and social care settings is hugely variable, and the new Care Certificate will only go some way towards bridging that. The vast majority of training still never really gets to student's heart and soul in a way that will be utterly unforgettable, and will permanently improve their practice and inspire them to deliver the very best care. Such an impact is as vital for newcomers in health and social care as it is for those who have been working in these professions for numerous years.

For people who are living with dementia and their carer(s) and families, access to dementia support workers, befrienders and other associated facilitators and providers of support and information is patchy and their skills aren't universal, so if you happen to be assigned a hugely knowledgeable and empathetic individual that’s great, but you may very well never meet such a person. Equally, there is no national programme to offer training to people with dementia or their carer(s) in a bid to help them to live as well as possible throughout their life with dementia.

The idea of dementia coordinators to help those affected by dementia navigate the services they might want to access has long been muted, but again, this isn't universally available. There is an expectation that GP's coordinate, but you can't do that effectively in 10 minute appointments, and besides, many GP's would argue that they need more specialist training in dementia to take on such a role. 

Primary care and community (district) nurses are potentially ideally placed to provide specialist dementia support, especially in the case of community nurses who are visiting people at home. However, there is no national scheme to recruit and train the additional numbers of nurses who would be needed in order to provide this type of service to everyone who wants it, and besides, where would the money come from?

Then of course there are Admiral Nurses - specialist dementia nurses who are to dementia what Macmillan nurses are to cancer. Admiral Nurses have been credited with providing invaluable support to families affected by dementia, in some cases even saving carers from potential suicide, but they are not trained by the NHS or Social Care. Admiral Nurses are provided by Dementia UK - a charity who are dwarfed in matters of dementia policy and strategy by the Alzheimer's Society. 

Admiral Nurses are seen by many people as an expensive option, but evaluation exercises are starting to prove otherwise, and frankly even if they are an expensive option, if they provide the support that families need then I would suggest that in a compassionate society that’s aiming to lead the world in dementia care and support, it is a price worth paying.

The money that has been invested into creating the social model of dementia awareness (£2.4m is quoted in this press release announcing Dementia Friends, while Public Health England issued a call for advertising agencies to pitch for the ‘Dementia Movement’ brief in 2013) may have been well spent considering targets have been reached. It can only be hoped that our communities are enhanced by having this greater understanding of dementia. 

My fear, however, is that without the specialists to call upon for each and every person affected by dementia, the overall aim of enabling people to live well with dementia will be lost. I’m sure that life for my dad would have been improved through living in the age of one million Dementia Friends, but I also know that through the many difficult challenges we faced, the decisions we had no idea how to make and the questions we had that went unanswered, that families affected by dementia often need a bit more than just a friend.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886