Living our own lives

Why is dementia considered as being so restrictive; this is a basic human rights issue yet so many are denied the opportunities to crack on and enjoy life everyday? Kate you are an inspiration.

Ok, I think I might be getting back into the swing of more regular blogging. There has certainly been enough ‘material’ around to give me ideas, and in going through my sent emails in a private gmail account, I found a large number of emails I’ve sent to myself on another email for blog topics! This is one note I sent to myself a few weeks ago! And the screen shot is of a quote I added to Facebook when I posted an article about Glenn Campbell’s latest (possibly final) album.

With the subject line ‘For a blog’, I wrote: I have a human right to be free, to have autonomy and to the same respect and disability rights as all others. I want health care to offer rehabilitation and proactive disability support at the time of diagnosis for us all. Most of all, I want others to believe our…

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Drumming vibes


IMG_2008Saturday morning; a hot sultry day in Matlock. Usually a time of sunbathing and catching up with the family. However, not today.

Jenny and myself went to meet the local “Young at Heart” group who are a keen vibrant bunch of people eager to embrace new ideas and things. Firstly we discussed dementia research and the local services in some detail. Jenny is planning to explore how family caregivers who provide daily care to their loved ones with younger onset dementia  manage their everyday lives. Jenny wanted to discuss her proposed work and also meet members of the group. Individuals spoke candidly about their personal losses and described how they had lost their jobs, family status, independence and belonging. On the plus side they did value the friends made in the group and wished for more regular meetings beyond the once a month.

We then joined a community drum workshop led by Nikki, who works with Making Space. Her enthusiasm was more than infectious; soon we were all engaged in two part rhythms and generally having a grand time. During the workshop we marveled at some of the drumming “naturals” who clearly had a talent for drumming in partner with others. This led to a sense of community as the rhythms took over and we all enjoyed simply being together and focusing on the music. Loud tempos were tempered by percussion instruments which enabled everyone to have a go. Tense expressions were replaced by smiles and the occasional dance as the group members carried on, ignoring their tender palms. We drummed and drummed, smiling at each other and enjoying the sense of achievement.

Current research now shows the therapeutic effects of drumming techniques. Research indicates that drumming accelerates physical healing, boosts the immune system. In addition specific studies conducted by professionals in the fields of music therapy and mental health show us that drumming:

  • Reduces tension, anxiety and stress
  • Helps control chronic pain
  • Boosts the immune system
  • Releases negative feelings, blockages and emotional trauma

The New York project EDGE, which incorporates drumming among groups of participants who are living with dementia has shown benefits.Rhythmic activities and therapeutic drumming circles are among the most effective tools we have for creating a communal experience among people with dementia. Rhythm and music strongly predicated on a rhythmic beat allows people to respond to one another, with feeling of competence “in the moment” and often with joy. Participating in a drumming circle allows the person with dementia to take part in a sustained activity. This provides for meaningful sound when communication skills have deteriorated. Family caregivers can also enjoy “being in the moment” where relaxing into the rhythms suspend the everyday worries.

A wonderful meeting which came to an end all too soon. Wouldn’t it be great to have an inter-generational drumming group in Matlock which includes all ages and of course those families affected by dementia?

Drumming pulls people together which is what we all  need in a world of increasing tension.

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.