Who to visit? Distance decision making among providers


Rural services cost more to provide than urban ones. This is a well known factor in the design and delivery of services. However, these costs are determined by rurality funding calculations which tend to leave the more sparsely populated locations inadequately funded. In short this means that providers are running at a loss when they decide to meet the needs of those in the most rural areas.This is because the resources such as travel costs in fuel, damage to cars on tracks and staff time all become too difficult for commissioned providers, such as home care services, to justify. There may be only one provider who because of limited staff resource cannot support the extra travel time required to fulfill the needs of one home in a more remote area compared to their overall demands. People living with dementia in the more sparse areas are vulnerable in that their needs can often only be determined by face to face conversations and so home visits become increasingly important as the condition progresses.

This is of little comfort to the statutory services striving to fulfill the agreements for daily support. It is of even less comfort to the person who qualifies for these visits yet despite an often lengthy assessment process is denied this option. The consequences may lead to home care providers unable to resource several visits a day to a person with dementia who may wish to remain in their own home. Formal services are then left with the stark reality of trying to avoid residential care by regular monitoring of the person without adequate support. This is understandably stressful for all concerned.

Occasionally I hear professionals who justify this inequity on somewhat dubious grounds along the lines of, “well they chose to live in the middle of no where so why should I spend all the extra time on home visits when I can see four others in the same time?” It’s an interesting logic and based on behaviours which we all recognise. Academics have named this the distance decay behaviour. But it is simply the balancing the losses in physical distance required, time and effort against the gains of doing so. For each journey consideration there will be differing balances but crudely the nearer and easier a journey is with the potential for achieving the goal then the more likely this is to happen. The decision to travel on a hot bus to the seaside is outweighed by the enjoyment of eating ice cream on the seafront. More seriously, for professionals, decisions about how far to go are influenced by many factors, not least the pressures to meet performance targets. Basically many professionals are measured by the total number of face to face contacts they make. There is a tipping point at which the demands of the distance out weigh the benefits of undertaking the journey. This is something we all do; we weigh up if the effort is worth the possible gains.

Rural dwellers have such decision making down to a fine art; clustering of activities into one trip are planned to maximise the time and costs of the journey. GP visits, shopping and meeting up in a cafe are all planned on the same day. Professionals will plan home visits as much as possible within the same location and times to maximise efficiency. The difficulty is that this logical way of organising our time, journeys and goals so often fail miserably to meet the needs of those with dementia. Dementia knows no such formula and tends to favour the moment. Even if the now seems a repeat of the previous hours to others. Dementia has no regard for the challenges so many professionals face day to day as they manage ever expanding caseloads. This isn’t about a lack of compassion or blaming people for the places they were born in among providers but one of trying to pull together the contradictory demands of performance models devised in the absence of any knowledge of rural working. In short, most frameworks have failed to rural proof dementia care, and so pressures are placed at all levels to fit a dubious collapsing framework.

At Government level, new strategies have to be supported which sanction the increasing demands and costs of rural care services. Local managers could consider pragmatic approaches to supporting the front line staff who are paying the extra costs of rural working. Ultimately though the costs are paid by the families affected by dementia who find they have no option but to leave their homes and face the inevitability of moving away from the locations they know and love. If the person moves into residential care then this will incur increasing costs for the families and statutory services. People who wish to approach end of life in the places they know well are denied this choice in rural areas. This can hardly be equitable.







Spending a penny? Trojan toils and tribulations



On average we all use a toilet at least 6 times a day. People with dementia may find themselves needing to use a toilet more frequently because of difficulties remembering when they last went and urgency. Going out can involve a protracted weighing up of the benefits versus potential hazards of being caught short in the absence of accessible toilets. Whilst this may be one of the unmentionables of life, difficulties with toilets can isolate people from undertaking many social activities. From buying those essentials, such as new shoes, to attending a family event, all may be abandoned because of families unable to find a dementia friendly toilet.

Rural areas are generally not considered as places which require public toilets. Here in the Peak Park there are more public toilets to accommodate the needs of visitors than in most rural areas. However, even these are susceptible to closure, either permanently or over winter. Some have been closed because of the urgent need for upgrading works. Public toilets are a necessity for us all; we now have baby changing tables, accessible toilets (operating under the Radar key scheme) and some adapted toilets such as wider doors. What we don’t have are dementia friendly designed toilets. Towns, such as Plymouth, working hard towards becoming dementia friendly, have adapted all their public toilets. By contrast, cities such as York, working hard to become recognised as human rights friendly, seem to have lost the basic rights of access to a public toilet. Awards to Yorks newly designed galleries include some of the most visually confusing and disorientating toilets I have ever encountered. It’s time to consider the politics and aesthetics of public toilets in public places and spaces.

Of course spending a penny for most of us is a fairly easy endeavour; even when the paper roll is jammed. For the person affected by dementia the design of public toilets can become a task of overwhelming difficulty, resulting in incontinence and profound distress. The presence of mirrors, lack of clear lettering/symbols, colour contrast signage and easy seating can all lead to immense challenges. One distressing incidence can effectively halt any future outings leading to a narrowing of families worlds. Social and family events will be missed for fear of a repeat of such distress. The consequences can exacerbate a sense of isolation and loneliness among families. Isolation can contribute towards a sense lowered well-being and feeling less valued among family members.

We have to question why planning approvals for new builds and upgrades fail to consider the needs of communities where people with dementia live. Why in an age when accessible ramps, lever type handles and raised height seats are the needs of people with visual and cognitive challenges consistently disregarded? Does design aesthetics really win in public places or risk exclusion of families affected by dementia? Surely with determination the designers, architects, local politicians and users can all work together to demand functional toilets for all?

As individuals we can all support people affected by dementia. I have been told of an act of kindness which a lady recently mentioned to me. Molly and her husband, who had dementia, decided to go shopping one busy morning. On the journey, her husband indicated that he needed the toilet. Realising the urgency of the matter, they dived into a pub and her husband was guided to the mens. Molly waited a while in the pub and eventually a young man came over to her and asked to have a quiet word. In privacy, the man explained that her husband had been doubly incontinent and was distressed…the man went to explain the issue to the management and then agreed to stand guard outside the toilet whilst the couple sorted the issue. The couple were treated with kindness and dignity in an understated way. All this in a fairly busy rural pub. This event happened more than 5 years ago but is still remembered fondly by Molly.




Walking Football; team work, natter and the great outdoors.


800-Walking football

Walking football. Sounds implausible and a little quirky. The beautiful game played out a steady considered pace with plenty of opportunities for team work, a chat and enjoying being part of the sport. Trained fitness instructors with a passion for the game provide warm ups, play the game with intermittent breathers and time to chat, followed by a shared cuppa and cake. All in the outdoors. As you know I’m a great believer in enjoying and being in the outdoors. Too many older people spent their days in the indoors, especially those who live in residential and nursing homes with dementia.

The benefits of football among older people are clear; improved sense of balance, strength, general cardiovascular fitness and a sense of achievement. An hour once a week can provide measurable physical gains and growing interest among older people with dementia as teams challenge each other to ever increasing tactics and wins. All positive things. Walking football in many rural areas would be further challenged by the lack of level pitches; an inadvertent bonus in the cardiovascular stakes. Men may fall but generally land on soft ground and pick themselves up again in the pursuit of the ball.

Walking football is promoted across the UK but not so much in Derbyshire. If you know of any then please let me know. Perhaps some local communities may wish to consider setting up a group? Some small clubs even provide regular sessions for all seniors as part of inter-generational activities which enables young volunteers to share their skills and passion for the game with the seniors. What a way to share the best of the beautiful game.



Moving forward to being in the everyday…

Image result for advanced dementia

Recently a very astute care manager, Elaine, mentioned to me the real concerns she had about the trend in dementia care which advocates reminiscence therapy. Reminiscence broadly involves the deliberate focus on a particular time, often when the person with dementia was much younger by invoking memories thorough music, questions and objects representative of the period. Caring for individuals who were reaching the more advanced stages of the condition, Elaine told me how she had changed her approach to dementia care. As an experienced professional she told me how, over time, she had decided to change her practices. In short she has shifted from prescriptive reminiscence sessions to focusing on making  new opportunities which foster a sense of contentment and enjoyment. Notably this helped her dedicated care staff, family members and most importantly the person with dementia to connect with each other. In the here and now moments of the everyday.

Exploring this comment, Elaine suggested that most of her staff were young and as such did not have first hand experience of the 1980’s let alone the swinging 60’s or the war years. Expressing her opinion that care staff are generally not modern historians, she considered the practice of trawling through these periods as potentially frustrating for staff and the person with dementia. Indeed reminiscence can provoke stark feelings of loss, fear and confusion. Staff can understandably regret words and actions which can prompt such negative feelings. Care which focuses on the building of positive connections helps to foster a sense of meaningful connections among staff who are engaged in highly emotional and physical work. Feeling valued and useful is important to help staff remain motivated in their work.

Elaine trains her staff to focus on building positive shared moments between her residents and staff. Regardless of the ability to recall these moments is not a requirement as Elaine considers that the sense of well being remains beyond the moment. This means that a day out to the seaside may have dissipated rapidly within hours of the visit but the sense of enjoyment whilst eating ice cream by the sea will remain. Memories of times gone by are respected but new experiences are nurtured. Contemporaneous photos abound so that the residents, visitors and staff can share recent experiences with each other. This in turn prompts conversations about future plans for things to do.

So what are the benefits of this approach? Firstly it fosters choice and opportunities: the remit is not to reconfigure past activities or experiences but to enable new possibilities. An accomplished painter may no longer wish to engage in painting in later life but would enjoy sitting quietly among lavender in the sensory garden. Likewise a person previously teetotal would enjoy a wee dram in the company of a friend.  Music by the band Cold play is enjoyed by a carer and resident during bathing, previously a stressful event. Yes the memories of this might not adhere but the sense of contentment and being in the moment can bring beneficial connections with others.

Dementia care is about acknowledging that cognitive changes are present and ever changing but the dementia itself can be pushed aside during moments of connections in the everyday. These moments matter. They bring hope and contentment.


Care Farms; multi functionality in the landscape of rural dementia.

Image result for beckside dementia care farms uk

Farms are getting serious about diversifying their businesses as the vagaries of Brexit will impact upon the security of subsidies. Of course farming has always been vulnerable to seasonal extremes which clearly affect the viability of crops and feed prices. Memories of the Foot and Mouth Crisis still abound in farming communities. Sustaining a workforce to continue farming by encouraging and training younger people is key to the succession of many farms. These younger enthusiastic people are the future of  farming as many of their peers will seek work in areas where the pay is more secure and the demands less. Likewise  enthusiastic younger people will be essential for ensuring the development of dementia care. Both will seek to demonstrate innovative practices and extend our current knowledge in the their respective fields of interest and expertise. Can this expertise be shared as part of collaborative endeavour?

Tourism has always been an arm of the farming community which brings regular money and helps to promote/maintain the beautiful countryside in Britain. This tends to be seasonal with peaks in the spring/summer months. Camp sites, Bed and Breakfast, self-catering  and even helping out on a working farm are all ways of meeting the tourist trade. Closer to home though farms are starting to consider other ways of securing regular incomes and helping their local communities. Whilst care farms may not suit every farmer they can provide an alternative to the more traditional ways of diversification.

Care Farms are one such model. Care Farms are basically parred down farms which home a variety of animals in a contained area of land to promote well-being among people who may be isolated and who wish to connect with nature, others or simply take time out. Many of these farms encourage people with mental health needs, learning difficulties, care givers, and others to contribute to the farming life. More recently people with dementia have started to experience care farms. In short care farms provide meaningful work based activity which promotes a sense of well-being. It’s a win win win. For the animals, people with dementia and the family care givers. The animals are often “rescue” animals who would otherwise be ending their days in confined conditions or worse. Ex-battery hens, discarded goats, elderly ponies, donkeys, and odd ball sheep all enjoy a life of pampering and luxury for the remainder of their days. The type and breed of animal is important since they have to be inherently happy to be pampered and showered with care by many eager hands. Savvy care farms also build up a high value herd of sheep or more exotic Alpacas to help pay for the ongoing costs of the upkeep.

People who attend experience the opportunity to make connections with others, animals, the land and the landscape. Being outdoors boosts not only vitamin D levels (far more effectively than any supplement), but builds muscles, balance and a sense of being connected in the present. We all need to feel useful; it’s part of being human. Time is not pressured which means that if a person with dementia wishes to spend several hours pottering around  feeding the animals then they can. Meaningful work knows few time boundaries on a care farm. This contrasts with the persistent pace of a working farm where time is pressed beyond compare. Likewise we find many of the more formal settings for people with dementia are similarly time pressed and in the light of often poor staffing task orientated care may dominate. Dementia becomes no barrier to engaging in the everyday and in the present.

Family care givers are blessed with the knowledge that they have a guaranteed break from caring of around 8 hours. Currently other forms of respite care can be cancelled at the last minute because of more urgent admissions which leads to giving up by the carers and low expectations of any real respite. However Care Farms are only exposed to the whim of extreme weather and would rarely close because of this. Family Care givers understand challenging weather and can adapt to this. For the care givers the options of regular respite provide opportunities for doing something else; they can return to employment, catch up on sleep, meet their family and generally do whatever they wish to do. Their loved one is occupied all day and the care giver has no need to worry about having to get everything done in a few hours.

So what about the business case? Well such an endeavour cannot run on thin air as clearly there are staff costs, animal feeds and so on to meet. Good quality care requires qualified people and so despite many managing on the donations of generous benefactors, longer term plans rely upon regular funding. However there is a case for several sources of funding from agricultural, rural and health organisations to support this by considering these ventures as multi functional; they are doing/providing more than one thing. In short they provide social value (this is also a new buzz word), maintain the local heritage, rural environment,  local economic value, and so on. As such the current funding mechanisms are often inflexible to support multiple collaborative sources of funding. This has to change as the debate about is care farming NHS, Social services and so on has to be adapted to match the reality of multi functionality. Care Farms, by their very nature, do not fit into the current frameworks for tendering and funding which curtails their potential. In short care farms can develop into hubs for the community to engage in ways beyond therapy. Perhaps this is one of the ultimate models for rural dementia friendly communities? We can’t afford to miss the opportunity for supporting the potential of care farms as one of the most effective ways to deliver meaningful care within rural communities.


Community Event in Wirksworth; doing more for Dementia


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?