Well, nothing really. It has been with us for centuries and misunderstood for many of those. We have been gradually identifying, assessing, learning and understanding it better to the extent that this century is at last seeing us getting to grips with how to manage it in the best interests of those who have it. This article takes a look at what is happening around the country and picks out some really good examples of what is happening to support people with dementia and regrettably, one example of how not to do this.
But first, it is well worth mentioning the various ways in which dementia presents itself (I am grateful to Purple Angels for this). Even though some people have never sworn in their lives (including me of course!), swearing and outright anger can be a feature usually born out of frustration and normally causes formerly quiet and respectful people to be forthright, rude, sharp, and lose their inhibitions to the extent of wandering around naked or presenting similar unsociable behaviours. The disease can also cause people to do lots of horrible things like biting, kicking, scratching, punching, spitting and so on. Incontinence can develop simply because the bowel signals are not being adequately received in the brain. All this causes frustration with perhaps knowing there is no cure and speech is impaired so effective communication diminishes. Random outbursts can be stimulated by all sorts of things like noise (people talking at seemingly the same time), crowds and busy people surrounding them. People with dementia never get lost and always know exactly where they are going but nobody else does. Finally, the label ‘sundowning’ is completely new to me but signals the onset of frustration, agitation, confusion when the sun goes down. So it’s definitely best to go to the Doctor in the morning!
The purpose of Purple Angels was originally to make Torbay the best Dementia friendly resort in the country but his grown so much since then and has an international flavour. Google ‘purple angel global’ for more.
In Sussex ,The Golden Ticket is a new approach to the management of dementia in primary care and is a fine example to all proponents of health and social care integration. I prefer the word cohesion because this example shows how well medical practices, the CCG and other primary and secondary care organisations can work cohesively to deliver real responsive health and wellbeing support in the community. In its early days of development it was found that there was a reduction of 20% in GP consultations and 25% reduction in acute admissions. Google ‘Golden Ticket emerging models of care’.
I always thought that Devon is the county you drive through to get to Cornwall but changed my mind when I heard about the Dementia Care Matters Butterfly Kite Mark. This has been awarded to 2 care homes (Sefton Hall and the Old Rectory) each of which are also rated by CQC as Outstanding and the latter awarded best care team in the South West by Caring UK.
The main ingredients to these resounding successes revolve around the picking up on the notion that Feelings Matter Most, the power of Music and Culture. The latter is all about developing the person centred theme with the caring team, called the Chrysalis programme. Finally, environment plays such a big part in the wellbeing of those with dementia so the richness of everyday normal life needs to shine though the humdrum with a variety of elements that signal a quality of life in such things as cafes, bars, restaurant dining, cinema and a variety of events that engage and sustain attention.
Moving on from Devon to Cornwall, Crossroads House was a former hotel (not to be confused with Crossroads, the TV soap) which has created a whole community with quality and community at the front end – a 1950s kitchen with Aga, village square, street scenes, tea shop pub, shop, hairdressers, even a railway station with platform. A miniature farm is planned. A model care home bursting with memory prompts and recognised by CQC for its innovation in providing a living community tailored to the needs of its residents.
I could go on with so many more stories of uplifting experiences. Neither did I wish to end on a down note but maybe it could be useful as a reminder of what not to do – a Local Authority has concluded that the cost of caring for people with dementia is no different to a less specialised care home, so because of the lack of beds that this created, the residents of one authority are now being placed in a neighbouring authority at twice the cost. Certainly an interesting take on market shaping at its worst.
Care Association Alliance