Community Event in Wirksworth; doing more for Dementia

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Memory boxes, lock boxes, photograph albums, music sessions,fiddle muffs, bug hotels, fire service, library services and voluntary services all gathered this morning in the Memorial Hall at Wirksworth. The community event was organised by  the vibrant  Patient Participant Group at Hannage Brook Medical Centre and supported by local NHS providers, NIHR local research teams to name a few. Stalls showed a range of different information including the largest array of fiddle muffs and aprons I have ever seen. I went along to promote the study and managed to distribute 40 general leaflets and discuss with families and providers. It was a great morning.

Attendance was great with many people coming in to try out and consider the resources for their loved ones and also to have a chat. Resources included a magnificent collection of 16 memory boxes which can be borrowed by any local resident or organisation for free. This service is run by the members of the PPG and has a considered registration scheme so that borrowers can simply and in confidence borrow the boxes. This is in recognition of the need to maintain privacy as dementia is  mostly a private family matter in rural communities. The boxes included themes such as holidays, music, gardening, baking, dancing, travel, entertainment, DIY, nurturing, knit n stitch, sensory, toys, dogs and cats, wildlife to name a few. These were donated by local schools, businesses, NHS Trust, local  groups and individuals.

Additionally borrowers can also use a selection of large adult picture books which are printed on fine paper and included a wide range of topics, designed to help with making conversations and connecting with memories. These are a great addition to the boxes and could be easily shared with all ages within families as they are a brilliant way to engage in an enjoyable natter at home.

Other activities included the work of the Wildlife Trust who are seeking to extend their current acute hospital based interventions into the local rural communities. Activities included making bug hotels from bamboo, straw, twigs and plastic bottles. Their memory box included some very gruesome slimy plastic giant slugs which were liked especially by the children.

The fire service attended with their information about supporting people in a holistic manner to not only prevent fires but to promote general well-being in the home. This seemed to be a very pro-active approach to managing memory difficulties and safety in the home, whilst being sensitive to the wishes of individuals. Likewise the mobile library service promoted their range of services to carers of all ages which include signposting to other services alongside home delivery of books and media. Making Space also provided a stand to promote their wide ranging new services in the area.

The most heartening aspects of the community event were that the local people have united to bring about changes in the choices for local residents affected by dementia. The turnout and genuine interest in the vast range of resources are a credit to all the hard work over the past months by the community. Local GPs, businesses, organisations and individuals have all contributed in very tangible way to the development  of a robust army of “doers”. Rural communities tend to be full of doers. If this small town can do it then lets build on the capacity of other small rural communities by sharing ideas and getting on with it!

Going round the Houses? Community Transport

Hidden in a very small part of Derbyshire is a transport hub which is a hive of activity. This is not your average bus depot/ cafe stop but a place where volunteers try hard to sell their homemade wares to raise a little more cash towards the services they provide. The hub arranges rural community transport for all ages from school kids to the older folks who need to access services. These services are partly funded by the local council but are heavily reliant on donations, contributions and voluntary support.

I spent a morning with one of their volunteer drivers last week. The buses are medium sized with wheelchair access and about 12 seats. Whilst they are modern they are not designed to easily maneuver along the single track roads or the narrow driveways. So hats off to the immense  driving skills and humour of Beth the driver. Along with a member of the day centre we were off to collect 4 residents who wished to attend. We were on a run from the day centre to the more remote parts of Derbyshire where rural idyll and access issues coexist in equal measure.

A briefing about the route commenced early and my assumptions that this trip would be anything but a circular shortest journey from A back to A with a few quick hellos and hop on were rapidly dismissed. A lot of consideration takes place to decided who goes where on the bus and the subsequent order of pick up and subsequent afternoon drop off. Factors such as likelihood of leaving the bus during the few minutes of attending to another, being up and ready to go, time from arrival to leaving a home and general logistics of approach to different hamlets were all taken into account. Local knowledge of the geography including road works and parking difficulties were essential. Likewise a taken for granted knowledge of their customers and the drivers themselves were  also important. In the space of several minutes I realized that this was an endeavour worthy of a place in some strategic masterclass. And I hadn’t even got onto the bus!

Martha the day centre staff member wrapped up warm and donned her yellow vest as we marched off to the waiting bus. Martha and Beth were very approachable pragmatic women who were expert in their respective roles. We enjoyed a somewhat bumpy ride out into the cold sunny morning. The bus was lovely and warm. First stop one of the oldest residents in the area. A long single track led to a beautiful bungalow with a somewhat challenging driveway entry. Beth recalled her first time “on the run” as one of absolute terror as she tried to avoid hitting a post and wall to turn the bus to the applaud of local workmen. I am pleased to report that Beth is now the most skilled driver and cannot be faulted for her patience and acceptance of all the challenges of the run. The lady lives at the back of the property and needs assistance to walk to the back door. Slippy wet paths did not help with the task in hand. Martha gently taps on the glass and indicates to the lady that she needs to bring the key to open the back door. This takes a while during which Beth brings a folded up chair and we have a chat about the beautiful garden. Martha is let in and gently prompts the lady to put her coat, scarf and gloves on. The lady is physically very frail but has bright eyes and is looking forward to going out so much so that she forgets to use her stick. Martha and Beth help her into the wheelchair with clear guidance and a warmth which is heartening to experience. We trundle off across gravel to the bus on the driveway. This is no easy task and I’d suggest that gravel and wheelchairs are not compatible.

About 10 minutes later and we are off. The banter is friendly and a discussion ensues about place of birth, the prices of local housing for young people and the weather. Next stop a famous tourist village. Even at 9.15 am the narrow main road is cluttered with parked cars. Beth takes the bus to the end of the main road, turns and come back down. She parks in the road and a house door promptly opens by the wife. “they have to wait whilst we do this” states Beth in her very pragmatic way as she leaps from the drivers side and opens the bus door. “Hello, here we are again!” she exclaims and the gentleman gets on the bus. A dance of the seat belt ensues with some stray hands around Martha as she secures the belt. This is disregarded by Martha and we are soon on our way with a patient tail back ensuing. We all greet each other. The sun shines fiercely obscuring visibility at times.

We kind of double back in a zig zag to go and pick up another gentleman. He lives in a cul-de-sac and although the roads are wider the bus is hampered by a parked car which has not moved for the past few weeks as the owner has gone abroad. Beth again impresses us all with her reversing skills. The gentleman is helped to lock up and down the path by Martha and Beth. His legs do not seem to wish to comply with his desire to walk smoothly and it is apparent that the two people support is essential. This is the quickest pick up so far.

Martha needs to phone the next person but has no reception on her mobile. This is an everyday issue in the area. Beth drives on a little and stops in a passing place so that she can lend her phone to Martha. Martha talks to the son of a new customer and it is confirmed that they will be waiting outside the village post-office. The plan works and the bus swings onto the post-office forecourt. We introduce ourselves to the lady who is sprite and seems keen to travel on the bus. Martha sits with her for the remainder of the journey and introduces us all again. The bus takes a while to reach the small town. This is a chance to enjoy the journey, catch up on local gossip between hamlets and villages and see the landscape changes. Comments are made about the sheep, lambing season, fallen dry-stone walls, traffic and the various homes we pass. Some chattered more than others as others sat and enjoyed the journey. Soon we arrive at the day centre and again the impressive reversing process and helping off the bus ensued. Martha came into the centre for her breakfast and a natter with the day centre customers and staff.

I ask Martha what she will do with the rest of her day and she replies that the bus needs to be washed and checked over before the afternoon runs. Martha volunteers every week and is an impressive part of the team who manage to ensure that older people can get to their day centres and hospital appointments. On reflection the sheer complexity of the role was so much more than a driver…skills such as empathy, tolerance and an enormous dose of humour are essential. Supporting some of the most physically frail in the community is undertaken every day by these staff and providers need to know that the job they do not only reduces loneliness but offers reassurance to carers who can be confident that their loved one is secure. Public transport cannot bridge this gap as they are not equipped to manage the complexities of reaching A to B. Being taken for a ride has new meaning for older people as a positive opportunity for connections to their familiar places and faces.

Let’s celebrate smelling the Alpaca spit alongside the roses…

 

Alpaca, Smile, Teeth, Fur, Funny, Farm

 

I’ve had a busy time recently and would like to share a few thoughts with you. Please feel free to challenge or comment on these as it helps shape ideas. These reflections are about the cultures of dementia care and the ways in which we all try to balance our perceptions of vulnerability, risk mitigation and expectations of dementia. Clearly I can’t cover all bases in this blog so there will be some gaps which will be filled or expanded on later.

Firstly here comes my “health warning” about this blog as I do not wish to cause any offence to you the reader. I am fully aware of the huge constant challenges which dementia brings to families who through love provide unwavering support in often very difficult circumstances. I also wish to mention the providers who are finding it tricky to balance the demands for their services with ever constricting resources. Many of these staff are going the extra mile in difficult times. These are very worrying times for everyone involved in dementia care. This blog is not about knocking these services or any of the wonderful compassionate people who strive to improve the lot of those with dementia.

The starting point then is a general consensus that we all wish to provide meaningful experiences for those with dementia. Ideally this would probably be imagined as a well structured “joined up” continuum of care from pre-dementia to end-of life. The type of care would to some extent be driven by the characteristics of the type of dementia and related challenges. Some types of dementia tend to lead to very distinctive kinds of behaviours which can be extremely difficult to fit into everyday life. Other dementias may be following a fairly predictable route with intermittent periods of challenge and adaptation to the next stage. Many may follow neither of the above and seem to be highly dependent upon other chronic conditions which seem to collectively impact upon the person with dementia. In summary, regardless of the type of dementia, everyone is different.

Services tend to be designed for a “dementia type”. This is in part to manage the resources of finance, skill mix and environment which various organisations provide. As with all care, dementia is also highly historical and the legacy of this history can still be apparent today. For ease of discussion I will contrast two types of provision: Day Care and Care Farms. In Derbyshire, we have day centres which provide a sanctuary and activities for the most isolated and vulnerable older people. By contrast we also have care farms which provide work activities within an environment of the outdoors. Both are highly contextualised in that the day centre will be shaped by their provision as predominantly indoors with attendees often showing physical frailty in addition to cognitive difficulties. By contrast the care farm will tend towards attendees who are more physically able but nonetheless may have profound cognitive difficulties. Much as the providers may wish to extend their provision to include more people their environment may hamper this as resources are required to make access easier. A day centre may be on the first floor of a shared building and so not able to support a person with their desire to walk outside most days. The care farm may strongly wish to extend their welcome to those with complex needs but cannot do so because of the need to provide an accessible toilet. In an ideal world both would be enabled to meet the diverse needs of all their attendees by the necessary resources.

The reality is less than ideal. This is not to criticise any provider at all. We do need to really consider how serious we are about meeting the needs of those affected by dementia. Today we have laws about disability discrimination and the rights for respite for carers. Oddly inclusion for older people is rarely raised as a way of securing resources. We have wheelchair users rightly demanding accessible shops, manikins with physical disabilities  and clothing which is more than merely functional. Where are the demands for at least equally important rights for people affected by dementia?  Perhaps it is in part because of our own values about growing old and subsequent expectations of dementia care as some hidden part of being in a community.

We tend towards an expectation of older people as vulnerable and so incapable. This isn’t accurate because many older people are managing their lives very well despite physical, sensory and cognitive difficulties. These individuals do not come to light until some crisis such as a fall or mishap lands them in hospital. The mishaps are generally addressed but the culture of risk mitigation kicks in with full force. Professionals who by the very nature of their first contact with the older person will tend towards a perception of them as vulnerable and not managing too well in the often alien environment of an acute ward. As one person commented to me recently, “God help you if you fail the kitchen assessment on the ward; there’s no release then”. Resources do not stretch to home visits and so these well -meaning professionals build up a portfolio of expectations based on their own experiences of managing people when they are often in pain, at their lowest ebb and in a strange place. These perceptions of vulnerability are reaffirmed with every new patient and among their colleagues. The spectre of possible legal challenge also looms large in the determination of the follow on care required. There are often discrepant views among families and professionals as these perceptions are considered using a somewhat differing scale of risk and getting on with everyday life. Personally I think that home visits are essential for professionals to provide nuanced post-admission care as they not only support greater accurate and informed decision making but also buffer the assumptions held by professionals about living well with old age.

And here is the crux of the matter; just as there is no one way to be an older person there is no one way to live a life with dementia. We are all different and remain so as we age. Old age and a diagnosis of dementia (or whatever) does not suddenly wipe out the individuality of the person or the key people, places and everyday which are all part of being human. Yet older people are somehow expected to not only subscribe to a general plan of being as prescribed by others in their best interest but paradoxically are also considered as more than capable of caring for a spouse with profound complex needs, running a farm and managing to sort out umpteen other matters. Why is this so acceptable? Logic suggests that these needs will change over time and that support may be required in flux. Why as a society do we expect spouses and old age siblings to care 24 hours a day when they often have their own health issues? How is it OK to provide respite only when the carer collapses in a heap of exhaustion?

Just as all families are different so are the providers. There isn’t one size fit all. The development of charitable and not for profit providers tends to evolve from the sheer bloody mindedness, vision and determination of a person who wishes more than anything to promote a better community. These organisations are often prepared to assimilate risk in their provision as a necessary aspect which is outweighed by the positive experiences of their provision. These tend to work hard to include anyone who wishes to try their services by individualism approaches towards risk analysis. However this isn’t all clear cut and often compromises are made in collaboration with all concerned which takes time and effort.

By contrast, larger charities and statutory organisations are risk adverse and work towards not mitigation but annihilation of risk. Annihilation of risk can be readily identified by a series of actions including none engagement, citing professional boundaries of practice, regulatory sanctions and a general “not getting it”. This has the effect of some organisations rendering themselves to a mire of stubborn protocols, procedures and creative distractions from the core remit. Ultimately these organisations become stuck in an attitudinal quicksand of along the lines of “this has always worked” and “we know best”. These practices obscure those who are arguably most vulnerable as they are refused access to services on the basis of being too risky. So growing old with dementia becomes a risky category.

So where does this leave the future of dementia care in the community? We have a range of highly visionary innovative smaller local organisations who are pushing the boundaries of what care in the community can be. These organisations do not tend towards securing monies from the statutory providers because of the very divergent perceptions of the values they hold about what makes good financial sense in relation to well-being.(They also do not have the energy to complete 40 page funding applications). Care farms where individuals derive immense pleasure and confidence by shovelling the shit and being spat on by Alpacas tend to have far less chance of financial support than say the regular day centre model where attendees playing bingo with prizes no doubt also derive an equally increased sense of well-being. Somehow care has to be sanitised, in a variety of ways,  to be acceptable to the statutory funders. I will call this the “Dettol” effect and comment on this another time. This is not to say one is better than the other; they are simply different in their approaches.

I am wrapping this up now but wish to summarise by provoking further thought. Derbyshire is currently undergoing a sweeping consultation about the future funding and provision of NHS and Social Services Care towards older people. This is a highly emotive concern for many rural residents who have genuine concerns about the logistics and thinly spreading provision across a large geographical area to a disproportionately high population of older people. Pushing aside the politics and immediate gains for individual councils and NHS Trusts perhaps this is an opportunity to really consider the variety of services which are required in the community to enhance well-being. The often small localised providers are all striving to meet the needs of specific groups of people in diverse ways. Let’s consider the benefits of smelling the shit alongside the planting of roses in old age. They are interdependent and all form a part of rural life which has to be celebrated and sustained.

 

 

 

 

Planting for summer

Recent research suggests that the outdoors can contribute directly to feelings of well being and support recovery from many disorders. There hasn’t been much research in the UK about the benefits of being outdoors if you have dementia. However the benefits are very clear to the providers of such activities at care farms where people with dementia report their enjoyment and eagerness to get out there whatever the weather.

Occupational therapists can be considered as a fairly obscure profession, especially if you have never needed the expertise they provide. Their ethos in relation to dementia care is one of meaningful activity. Progress  in maintaining mobility and mental health are also key but the reality is that dementia is a progressive illness. Maintaining health and well being is an aspiration most of us would wish for. In relation to dementia this aspiration can be seen as somewhat fanciful especially as dementia may show itself as challenging behaviours and generally difficult for all. But having dementia need not mean a life of despair and difficulty. Engaging in meaningful activity can support better mental health and a sense of well being by mitigating the more negative aspects of having dementia.

The effects of dementia can be somewhat “dampened” or “masked” by the provision of meaningful activities which are subtly supportive but enable the person with dementia to work alongside others. Take Bill (not his real name) who supervised me in the art of arranging primroses by colour in the wheelbarrow as part of a planting scheme. Bill has a very generous character and clearly enjoys the company of other people. He is also happy helping around the farm. It’s easy to see how much pleasure Bill derives from spending his time at the farm; there are always new things to discuss and jokes to make. He regards himself as a working member of the team and is keen to tell me about his plans for the future animals. It is hard to not imagine Bill at the farm.

Perhaps care farms and places which are primarily focused on the doing rather than the not doing are ways forward for dementia care. As one therapist told me several years ago we are too keen to worry about the risks than to let older people live their lives. By contrast the field of learning disabilities seeks to enable living with risk. Maybe dementia care could learn from many of the approaches promoted in the field of learning disabilities?

 

Care Farming; a working model

Yesterday I spent the day in the company of a group of hardy souls  at a Derbyshire Care Farm. Despite the chilly weather I had an inspirational time. The members who come to the farm spent the day in useful activities such as caring for a multitude of animals, gardening and generally sharing ideas. Regular healthy refreshment breaks are taken which also give an opportunity to warm up, sing and discuss the progress on the farm. The facilities are a work in progress, somewhat basic but this seems to add to the general sense of being in the landscape and the activities of the day. Men seem to especially like the environment.

Of course there is a risk of providing an  overly romantic account of my day. But the fantastic work of this place is that dementia becomes almost obscured by the working day. This is surely the key indicator that this model works.Farm workers and visitors focus on the task in hand in an unhurried way which subtly accommodate some of the challenges which being older bring. Pushing a wheelbarrow, by a chap who normally walks with a stick, provides a novel way of navigating the uneven ground littered with molehills. Similarly roaming across a field and soaking up the sun against the animal shed is not challenged but quietly noted by the others. Similarly a quick pee by the poly tunnel is encouraged as a way of restoring continence and getting on with the job of finding a bucket of scatter feed.

What makes this all work so well? The combination of being out in the open, regardless of the weather, provides opportunities for conversations way beyond the often task orientated question and answer dialogue. Relaxing into the rhythm of the day there is much pragmatic conversation about family members, nonsense poems, petting of animals, appreciating the vivid vapour lines in the sky, marriage and lastly having dementia. Dementia is mentioned by those with insight but as a passing declaration; “I have dementia and three of my family also have dementia”, followed by, ” I come here for the company…it’s friendly”.

Care Farms provide a venue for valued work in a supportive place where animals and people are patient. Working provides physical exercise, a sense of place, ongoing company and most of all a sense of purpose. People remember that the chickens, goats, horses, rabbits and alpacas all have to be fed in the morning. Then plants need watering and tending to. Each day these jobs change in subtle ways: feed has to be distributed evenly to all the hungry horses, the wind lifts the hay which has to then be collected up. Opening of gates involves working out the release mechanism and where to stand. These challenges stimulate decision making as the farm staff pause to allow a response. It’s slow farming.

Recently the farm was criticized for having only people with mild dementia. It seems a shame that we consider the severity of dementia as a reason to negate the valued work these places provide. My own observations were that the majority of people in the group had significant cognitive challenges and that in a less stimulative environment these individuals would probably spend their time in ennui, fingering items, foraging or wandering. The beauty of the care farm is that these behaviours are reduced because of the core ethos of providing meaningful work for all. Let’s not forget the whole day also provides respite for the carers who can choose how to spend their time knowing that the cost of £65 a day provides a high support ratio for their loved one to be fully engaged in the day.

We need more care farms to remind us all of what matters most to people with dementia and their carers. Care farms challenge our ideas about keeping older people indoors in risk free places; people with dementia are able to embrace the many challenges the outdoors provides. Perhaps we a service providers need to consider why we work so hard at risk mitigation with minimal regard for the rights of people with dementia.

 

 

 

 

Here’s to the Rahman Effect

Enhancing Health and Wellbeing in Dementia

Shibley  Rahman has published his third book in the series which critically examines dementia care and approaches towards greater holistic and integration across the board. Shibley has always been an inspiration and frequently provides us all with challenging controversial views. His work builds on the ethos of care proposed by the person-centred care models but tends towards a more collective and individualistic combination of dynamic approaches by incorporating  a societal,  organisational and individual focus. Since dementia is clearly a progressive illness it is heartening to consider the ways in which we can respond to the changing landscape of dementia care as one of fluidity and flux. Sometimes we expect people affected by dementia to continually positively adjust to these often subtle changes in ways which defy logic; how can we expect a person with dementia to remember their GP appointment if they are having a bad day and having trouble trying to make sense of their place in their own home?

Every interview and conversation I have with those who give me their time to discuss their worlds, I am struck by the irony of how much providers assume people affected by dementia can consistently manage. The very nature of dementia changes day to day with seemingly small things impacting upon the ability to make sense of surroundings and people. This book articulates some of the ways in which professionals may make sense of their observations and in time pressed circumstances seek to validate their own responses.

Organisations need to be honest and supportive of their staff in ways which will help them to understand their dynamic place in their relationships with others. This book goes a fair way to helping us all understand the ways forward towards truly integrated care. This will promote wellbeing in the widest sense rather than constantly firefighting every crisis. Every care provider team, statutory, third sector or private, could do far worse than read these books. Let’s all embrace the  Rahman Effect.