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.

Dementia Friendly Societies; supporting the ordinary everyday…

Interim thoughts from the Scaling the Peaks Research (2015-19)

Recently a candid article, “Here’s to the ordinary world that I miss so much”, written by Rebecca Armstrong appeared in the press. As a carer of a disabled husband, Rebecca  wrote about how excluded the couple were from experiencing the ordinary everyday things which most of us do. The mundane activities “wish list” included getting to the shops, shopping without stares from others and sleeping as man and wife together. No bucket list of heroic deeds for this couple as they attempt to navigate the challenges of marriage and disability to achieve some normality. Rather than seeking a sympathetic response, the writer exposed the persuasive barriers to achieving these aims as pragmatic issues. This is something we can all relate to, especially when faced with dementia in the family. The heart of achieving a dementia friendly society is one of visionary pragmatism. It is about inclusion in the ordinary every single day. This isn’t about money or some sustained severing of services according to whether they are social or health. It’s about letting people live the mundane which binds those relationships.

Scaling the Peaks is a large qualitative study which focuses on living with dementia in rural areas. Rurality exposes some of the barriers to living the everyday which are also relevant to more urban dwellers. Rural dementia is essentially  about infrastructure, equitable access and the ability to remain in the locality. It is also very much about frugality, realism and enjoying the mundane every day. What can rurality show us about dementia in older age?

Firstly infrastructures provide the foundation upon which all other aspects of managing the everyday connect. Generally none of these infrastructures work in isolation; people are key to every part of this huge pivotal mechanism called community.  This includes people with dementia, family and friends, businesses, service providers and community organisations. Too often health and social care are clumped together in the absence of their relationship to these infrastructures. Discussions and taking part in everyday activities with people living with dementia, have identified the “ordinary” infrastructures which mean the difference between remaining a part of the local community or becoming an outsider. Key infrastructures include; Transport, robust IT and phone communications, accessibility to meaningful places, affordability of fuel, food, leisure and interests, transport, safety, acceptance by others, maintaining independence.  Activities such as attending church every Sunday, walking freely along the byways, feeling secure in your own home, enjoying a trip to the café and buying stamps at the post-office are all important to older people. The reality is that many of these infrastructures are fragmented as key providers find them no longer viable. These are the things that matter to people living in their communities regardless of their level of dementia. There is a need to raise the debate about how to support community infrastructures in ways which are sustainable, robust and viable. This means a shift from the assumption that a greying army of volunteers will manage to achieve this to one of combining business sense with a community ethos. Major service providers such as mobile phone and broadband, will have to commit to securing reliable networks, the current absence of which hamper all who work and live in rural areas. Likewise banking, post-office, pharmaceutical and food outlets need to consider the impact of abandoning small towns and rural locations. Equitable services may require levy to sustain them in rural areas.  No doubt innovative ways will have to be devised to manage these foundational aspects of rural services.

The second most important aspect of rural dementia is one of maintaining independence. Many older people fear the loss of control which dementia brings as it progresses. This includes the perceived narrowing of the world around them and the inevitable isolation this brings to families affected by dementia. Stigma and privacy are strong aspects of growing old in these communities. People do not necessarily identify as being old or even having dementia; working in the family business continues as a priority. Key services need to mitigate the impact of dementia but not subscribe to a one size fits all. In rural areas we also have a real need to accommodate the specific needs of men and women who are simply not used to being indoors. Years spent in the outdoors foster a sense of identity and security connections with key places. Many older people value community in ways which may seem alien to the more urban dweller. Places, seasons, weather, animals and people matter. There are genuine connections and meaning derived from observing the changing seasons, the patterns of nature and that this is understood by others. We do tend to physically isolate older people from experiencing the outdoors by constructing services within the often sterile boundaries of care settings which sever these connections. We attempt to sanitise dementia and in doing so compound the sense of loss of connection. Innovative services such as care farms, rickshaw rides along accessible byways and slow bus trips along lanes can all help to maintain a sense of connection with place. The Right to Roam, originally coined by the mass trespass in Kinder, is particularly apt for rural dwellers living with dementia.

Families managing the challenges of dementia often speak of the sense of fragmented generic services. Generally introductory sessions are freely provided with subsequent attendance requiring an often significant contribution in money and time. In reality this means securing extensive funding for day care but being unable to access this because of the lack of suitable incontinence products for the journey and day away. This is a false economy and fails not only the individuals but also the whole ethos of social care. Families feel left to manage these issues alone and find the message of dementia friendly societies as an empty mantra. Families affected by dementia need advocates and champions to challenge the funding decisions such as a removal of laundry services not as some inevitable consequence of austerity measures but as a fundamental part of maintaining dignity and valuing the incredible work spouses and family undertake every day. Many rural families access help late only to find a lack of holistic provision which can enable them to continue caring and avoid crisis. Crisis in dementia is regarded as an inevitable aspect of dementia by families and whilst some may not be avoidable, greater attention can be given towards the recognition and avoidance of preventable crisis.  Service providers also express the deep frustration which they experience in having to manage tight budgets and constraints on their time. However, the current sense among professional providers is that multiple crisis episodes are an inevitable aspect of dementia. In rural areas reaching a crisis with no responsive home support can lead to practices such as sectioning in order to secure the  intensive support required.

Rural people with dementia do not have the same choices as more urban dwellers; there is a significant lack of residential and nursing homes. As such respite care is often patchy and leads to long delays even when approved in finding a bed. In remote rural areas, many carers are happy to consider a couple of hours a week as sufficient but this is often not viable as care staff will not travel to the remote places. This has led to an assumption that since people choose to live in remote areas then their needs will be met by family. However, many families are dispersed and it isn’t uncommon for an aging farmer to be working alone or a retiree to be isolated without local ties. If dementia develops then the first professional to become aware of this is the vet as animal welfare becomes an issue or the local pharmacist who notices increased confusion.

Labelling places and communities as dementia friendly may lead to families not wishing to access dementia specific services.  There is simply no singular model of a dementia friendly society. In rural places services have to encompass the everyday living experiences of dementia. Dementia may not be the primary concern but a part of many other challenges such as managing a business or retirement. Growing old need not mean being isolated from the community. It may be that we need to consider developing age friendly societies which encompasses the entire life course to enable communities to grow together regardless of age.

 

 

 

Key publications pending;

Sherriff, I., Marshall, F., Pascoe, A. (2017) The Rural Dementia Charter, The Prime Minister’s Challenge. Alzheimer’s Society, UK.

Marshall, F (2017) Dementia in Crisis; recognising and avoiding crisis in the community Age & Ageing (pending).

Marshall, F (2017) Empathy in Stroke Units in Waring,J., et al (eds) Transitions in Care. Routledge Press (pending).

Scaling the Peaks Research

In recent years there have been several major initiatives to change the way that society is able to respond to the growing number of people with dementia. The ideal is a “dementia friendly society” where people with dementia, and those who care for them, are not alienated or merely tolerated, but are enabled to sustain their local connections and lead meaningful lives.

As we know, living with dementia proffers many challenges and can leave families isolated, lonely and exhausted. As a society we need to minimise obstacles and promote valued connections within local communities. We know that these connections help to generate a sense of wellbeing and there are ways in which society’s infrastructure can be adapted to optimise community participation of the more vulnerable of its members, including those with dementia. By infrastructure, we mean businesses, public services and  the voluntary sector.

The recent publication of the “Dementia Atlas” by the government provides a visual map of living with dementia in England (www.bbc.co.uk/news/health-37092989). The information used to develop the map relies on a range of data, most of which depends upon a formal diagnosis of dementia. Various kinds of information are provided in clear ways which, by one click, allows the viewer to see how a region  compares with its neighbours. The map is a good starting point for exploring the regional differences in the care of people with dementia and includes the rates of diagnosis, emergency admissions to hospital, end-of-life care and the degree to which there is an infrastructure to allow the person with dementia to die at home if he/she so wishes.

There are currently wide regional differences between the various criteria comprising ‘dementia-friendliness’. One section of the Atlas includes a measure of how dementia friendly an area is compared to the national average. A key measure gives an indication of the number of individuals who have attended a Dementia Friends session to learn about living with dementia. Whilst this scheme is to be lauded as a way of improving our knowledge about dementia, reducing stigma and stimulating inclusion, it is also a broad measure of how dementia friendly a community actually is.

Building and sustaining dementia friendly communities is a challenge which many key organisations, such as GP surgeries, NHS hospitals and care providers are enthusiastically engaged in. Small local businesses such as hairdressers, post-offices and pubs are managing to provide dementia friendly places, often in the absence of any national initiative, but in a genuine desire to support local residents. However, much more can be done and the real strength of developing such communities lies in the participation of people actually affected by dementia, be they family caregivers, neighbours or providers of services. My own work seeks to examine what makes a dementia friendly community and understanding the diverse needs of different communities. Rural communities, for example, face different and particular challenges which are often overlooked by national bodies.

There are larger numbers of older people living in rural than urban areas in the UK, yet the majority of dementia care research is located within urban areas. A study funded by the Alzheimer’s Society and located at the University of Nottingham bucks this trend by seeking to understand the particular circumstances of living with dementia amongst rural dwellers. However idyllic the scenery of rural areas such as the National Peak District, developing a dementia-friendly community in these more isolated places comes with a range of challenges not faced in more urbanised areas.

In a study called Scaling the Peaks; Understanding the barriers and drivers to providing and using dementia friendly community services in rural areas: the impact of location, cultures and community in the Peak District National Park on sustaining service innovations, we will visually map the services and resources available to people with dementia and their carers, and examine how these are affected by the local geography and seasons of the year. This study includes people with dementia and the providers of support in a very rural location with a particular interest in what makes a dementia friendly community as told by older people with dementia. In short, we are examining the ways in which rural dementia friendly communities operate.

We commenced work with voluntary, health and social care providers by regularly meeting with them to observe and discuss the ways in which they collaboratively work to build and maintain dementia friendly communities. Early evidence suggests that there is a diverse and committed number of mostly small “grassroots” initiatives which seek to value all members of a community. So far the findings suggest that the church, local shop, pub and agricultural markets are seen as pivotal places which are valued by members of the community; arguably more so than public services locations such as health centres, libraries and village halls. Robust reliable and affordable facilities such as transport, internet and landline services, fuel and housing, as well as accessible health and social support are all considered fundamental to rural dementia friendly communities.

We are currently seeking to recruit up to 90 families living with dementia as part of the longitudinal study to understand their experiences and views about living in the Peak Park. Each family will be visited by the research team every few months to discuss their everyday lives and explore what they value the most in their communities. This will include physical, social and community sharing activities in addition to the everyday needs.

This information will be used to develop a visual and conceptual map of the area to identify the types and locations of dementia friendly communities. The map will be freely available on the internet. We also plan to make a toolkit so that communities can build their own dementia friendly communities in ways which are useful for their residents. This will help in the future planning of services and support the development of truly dementia friendly communities across the trajectory of living with dementia.

Older people and their caregivers are very welcome to discuss the possibility of taking part in the study by contacting Dr Fiona Marshall by email on fionamarshall2@nottingham.ac.uk or mobile on 07920 813613. A formal diagnosis of dementia is not necessary to take part but participants do need to be seventy years or over. Family and friend caregivers are also invited to take part and can be any age over eighteen years.

Fiona Marshall
Project Lead
For more information: www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2997

 

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Welcome to Scaling the Peaks Blog

Hello,

I’ve spent the past couple of hours with Jane and Mary from the Farming Life Centre, Blackwell, Derbyshire building a dedicated Facebook and wordpress website. Jane and Mary have provided essential help whilst I provided cookies (the oaty ones not the computer type) So here goes…..

I’m really lucky to be fullly funded by the Alzhimer’s Society to undertake a 4 year study which will examine rural dementia. This is a new venture for the Alzheimer’s Society who recently decided to allocate research funding to care in addition to the more biochemical research.

Why rural dementia? Well we know a fair amount about urban care because the majority of studies have tended to take place in the immediate vicinity of universities and organisations which are located in the cities. Models of care, including the design and delivery of services for families affected by dementia have tended to pay scant attention to the challenges of rural living. We know that rural services cost more to deliver than urban and that this has an impact on the range of services. In these times of austerity rural care will inevitably have to show real value for money.

This research intends to contribute to the growing body of knowledge which is examining the design and delivery of rural services. We know that urban models tend not to work particularly well in rural areas for many reasons. Some of these reasons may be clear and others more opaque. Infrastructures such as reliable regular transport to local GPs and shops are key to older people remaining independent, fuel costs for heating and cooking tend to much higher in rural areas because of the reliance on oil, housing costs are higher in the most picturesque parts of the UK because of the demand for second homes and rural idylls, the demographics lean towards more older people and less young families which impact upon the availability of care givers. And the list goes on.

The more hidden reasons are ones which may be common regardless of where you live; pride and resilience, stigma of dementia, having to carry on in work, multiple types of illness and isolation. A weekly social meeting can make all the difference to feeling well or feeling rotten and isolated.

So this work aims to highlight some of those issues and to share them with key organisations so that services can be designed and delivered and sustained in ways which truly fit rural communities.