Where do we go from here?

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“…this is the price we pay for democracy. The majority get the services where the majority live. We get nothing…how is that fair? ” Family care giver August 2017. 

Currently the residents of the Peak Park are adjusting to the news that a number of community hospitals are closing the majority intermediate and respite beds. These hospitals are the sites of many memories for older people and more recently, often the places where a diagnosis of dementia is confirmed and follow up care provided. This blog represents the views of some of the families I have been in conversation with over the summer. As such they do not solely represent my views. Please also note that this study is not about the decisions which have been made to redesign local services since many of those were in the pipeline long before the study started. Nevertheless, the issues and outcomes of consultations with the community have been at the heart of many concerned families and providers of services.

There are a number of key issues which I wish to relay to readers of this blog. Firstly living in a rural and often remote location brings challenges which can, by the very nature of being less visible, render residents more vulnerable to changes in services than those who live in more urban areas. The capacity and flexibility to adapt to cuts in services are not as elastic as more urban centric areas. This relates to the infrastructure of the community, which I have mentioned in previous blogs. To recap these relate to the availability of a trained reliable workforce, ease of transport and travel across the region, digital connections (for telehealth and general communications), acceptability of service to differing communities and the range of services. These cannot be underestimated when considering changes to established services.

We have to remember that in National Parks there are also other infrastructure considerations. Building dedicated housing for older people and the availability of affordable venues for social groups and day care to meet are limited by laws about maintaining the remit of the National Parks. As such there are inevitable tensions between the needs of vulnerable residents who wish to remain in their locality and maintain their sense of belonging with the need to keep the Park as a place for the enjoyment of all that is tranquil and maintains the notion of countryside. Tranquility is fine and an aspiration for many including those who live in the Park. However, for residents of the Park, the current drive towards urban centric services, will generate less opportunities to engage with members of the local community and fosters a sense of disruption and anxiety among the most vulnerable. There is an emergent sense of frustration that upgraded local venues, such as village halls, are no longer affordable to local groups.  Local providers  are increasingly concerned about their futures. Day centres are one such provider.

Day centres may not be relevant to all but they provide an important service in the community. There may be the need for some “tweaks” and reconfiguration of the nuances of these but broadly they provide, at often minimal cost, an essential bridge for the most vulnerable people. These people will have not only dementia but also several other illnesses which require a highly skilled workforce to support and maintain. So what do they provide which cannot be duplicated in the thrust towards home care? Firstly their co-location with other key providers such as GPs, social worker teams and within the eye of the local community cannot be underestimated. The willingness of GPs to “nip across” to check on Mrs. M whilst she attends the day centre is built on mutual collaborations and established working relationships. The visibility of the day centres provide a reminder to those in the community that our older people are just that…Ours. Relationships, often over many years, are reciprocal in their nature. Families give what time and resources they can to helping raise funds for the Christmas outings and staff spend their spare time scouring markets for activity resources. People feel a sense of connection; we know that being with others is good for us in many ways. Being at home isolates and renders families invisible. Day centres also keep people in the community longer, despite their often high levels of need which are mostly on a par with those of nursing homes. As such core care, such as bathing, feeding, toileting and mobilising are all met. Subtle “keeping an eye” is often disregarded as none essential or even intrusive by those who decide the future of these services.It is good to know that Mrs. M will have her medication checks on time and in an environment where a professional can provide the necessary knowledge for the GP. It isn’t hard to see how these everyday actions are not only good for the financial spreadsheets but more importantly generate a sense of a safety net for providers and users. In short, these services run on a shoestring, yet provide so much for the local community which I doubt can be replicated in the models of home care. How much more could they do with adequate funding in their communities?

We need to accept that dementia is a progressive syndrome and as such is often compared to cancer by families. There is no cure for dementia: the best we can do is to at least strive towards providing the best personal care possible, regardless of the stage or presentation of the condition. Even those with identical types of dementia will experience differences in the characteristics of their dementia. All too often we expect families to travel along a linear pathway that is called the dementia journey. Let’s get rid of this notion. Dementia is a journey but so is life generally. Each journey is different, some treacherous in parts, some wonderfully content and stable. We need to have a broad range of responses in the shape of relevant and robust services, which can effectively respond to the changing needs of families. Some of these service models will be providing “traditional” types of care which currently seem to be seen as outdated and irrelevant. For some families these are essential and make the difference between permanent residential/nursing home care or continuing to live at home with day care. These services need to be enabled to talk to each other and collaborate with the priority being at all times the individuality of the person with dementia. Why is this so hard to achieve?

 

What a week for Rural Dementia!

Over the past week, a number of key matters relevant to rural dementia have been highlighted in the media. These include; the Lancet paper about dementia risks, the work of the National Parks, changing childhoods and the announcement about local NHS provision in the Peak Park. On the face of it you may be wondering what links these matters. In short they are all happening in the Peak Park. Since I’ve been asked to give my opinion on these matters I thought I’d try to write a blog.

Firstly, we had one of those headliners which attracts so much attention. The team at University College London, published a paper in the renowned Lancet. The Lancet is a highly regarded academic journal which many academics can only aspire to. However, the experts, headed by Professor Gill Livingstone, have identified 9 factors which contribute to the risk of dementia. The team spent many months examining and assessing mountains of evidence to identify the key factors which can contribute towards a higher risk of dementia. A risk of dementia is not the same as getting dementia; you can have all these risks and not get dementia at all.  Some of these risks are to do with past and present lifestyles. Some are possible to change if you wanted to whilst others are more indicators. As with lots of dementia research it is complicated stuff but nonetheless helps discussions around dementia. I am not going to go into the whole paper but suffice to say the media presented both stretched and not so stretched versions depending on the source. However the factors include; health issues such as having type 2 diabetes, high blood pressure, obesity,  mid life hearing loss, smoking and a history of not seeking help for depression at the early stages. These are all health conditions which can be managed and possibly mitigated by the NHS. The other factors are less easy to manage and include social isolation, lack of physical exercise. Lastly but significantly is the level of educational attainment, which generally means the higher the level, the lower the risk of dementia. Educational attainment is more tricky as clearly educational attainment is a much about opportunities in childhood. As a family carer pointed out to me, whilst it is interesting to know, it is often very difficult to change habits and especially when older and stressed with caring. I agree but all is not lost.

We can’t do much to change educational attainment and clearly opportunities for continuing education were very different  if you were born in the 1940’s than say the 1970’s. Gaining a place in a grammar school and possible university level education was an exception, particularly in rural areas. However, adult education thrived in these communities with evening classes in many subjects, some of which led to formal qualifications and others were pursued for pleasure of being with others sharing same interests. Although the landscape of adult education has changed and indeed contracted, the interests of those who attended continues, often as dedicated interest groups. In the Peak Park we have historical interest, community choirs, classical language, poetry, miniature modelling and dance groups. Many of these thrive as not only places of lifelong learning but also as places to build lifelong friendships. And we could consider each of these risks but really they don’t work in isolation but neither do the preventives. Indeed on balance the preventives may be dismantling more than one risk!

In many ways dementia is about trying to adopt a proactive approach. This can be done by enjoying getting out in the outdoors, maintaining connections with others and generally following all the usual healthy lifestyle advice. It is also about the community and organisations supporting these healthy lifestyles by supporting dementia friendly walking groups, considering accessible paths and stiles which creaky bones can skim over, providing running buddies, enhancing the trails so that a person with dementia can walk with independence. This week is National Parks Week. National Parks are both places of outstanding beauty but also working landscapes. The stretched park rangers strive to manage the landscape and the people who live, work and visit.  National Parks attract many visitors who wish to experience the great outdoors on hot(ish) summer days. Whilst they are busy places, the parks can also be places of great isolation and harsh chilling loneliness. We know that many older people feel especially isolated when they can no longer go out to their places of connection and so independence is so important to maintain.

One of the striking lifestyle factors which I had underestimated is just how physically fit many rural older people are. It isn’t uncommon for retirees to walk 6 miles every day across uneven terrain and indeed many continue to do so even in very advanced years. Likewise, the number of fell runners and cyclists who in their younger years of retirement were still competing in events is significant. Old habits die hard and many of these wonderful older people with dementia still desire to have a short run or a cycle down the trail. These old habits, especially among those living with dementia,  can be interpreted as “escaping” or “wandering” when really they are simply strong desires to get into the outside and to enjoy exercise.

Another aspect of living in a rural area are childhood experiences; another report which did provoke interesting conversations this week identified the changing nature of childhood activities in the outdoors. This report didn’t hit many of the headlines but is a contribution by the National Trust.  Mud pie making, birding and den building have been pushed to one side to make way for computer games. It seems that climbing trees, once the core remit of every kudos seeking 6 year old is no more and often deemed too risky by adults. Memories of being in nature are one of the most enduring and positive stories which people with dementia tell me about; the joy of learning to be outdoors, to avoid being caught by an adult for doing some risky thing, the joy of hiding in a smelly muddy den and discovering wildlife. Do we really want to deny our children such lovely memories?  Perhaps grandparents need to encourage such risk taking. Perhaps we need to enable all children to experience such activities, in the absence of an adult eye, to foster such enduring memories.

On a more serious note, over past year, the Peak Park community has been involved in a consultation process to decide the future of NHS community care, especially for those with dementia and/or in need of rehabilitation following illness. The outcome decisions were announced earlier this week and include an overhaul from community hospital bedded care to individual care in own home. This care will be along the lines of an intensive period  of rehabilitation and support by a team of community experts. Many people in the community responded to the consultation with over 22,000 signatories from among a total local population of 37,000. Fears, anger and disappointment have compounded into a sense of abandonment among the most rural dwellers, many of whom do not have the resources to undertake complicated journeys to centres of excellence for their care. I am worried not so much about the decision to support own home care, which is evidence based but about the consequences for the future accessibility among the most remote dwellers. We know rural care is very expensive to deliver but infrastructure issues about living in a remote region seem to have remained marginalised throughout the consultation. Yet not addressing these very issues could see the failure of what can be a very good step towards exemplary rural care.

This brings me full circle to the particular nature of living and working in the Peak Park. The population as a whole is static and declining because there are more deaths than births. Already the proportion of older people is much higher than the UK average of 17% with an average of 28% in the Park. In some parishes, the number of people over 65 years stands at 39% of the total parish population. By 2028 the overall figure of over 65 year olds will be 48% (ONS, 2015). That is really worrying. Now is the time to consider the genuine future needs of the communities and to consider preventing the decline in younger families and subsequent workforce. Without a secure workforce then the future needs of families affected by dementia will be reliant upon the goodwill of ageing family members. This is a real concern and unique in such rural areas.

So that’s my round up of the week; one of positives and also some less than positives. We can build on the positives so that living with dementia in a rural area is one of well being.

 

 

People with dementia contribute in ways we may not notice….

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Families affected by dementia often let me know the ways in which they manage day to day with the effects of dementia. All too often I am in awe of the sheer tenacity and strength which these families demonstrate so that they can continue to enjoy their lives.

Often we hear in the media about the negative factors which push couples to the limit, especially as the dementia reaches points of new ways of challenging those around. Sometimes this may be changes in behaviour, such as ongoing allegations of betrayal of trust, verbal aggression and decline in usual pride in appearance. The list is endless and throughout the dementia these changes may be transient or stick around stubbornly for months. This is the downside of dementia and is often emotionally exhausting for the all those affected, including the person with dementia.

However, often this means  that even in the reality of these difficulties that the entire relationship becomes or feels, one sided with the person with dementia sapping the entire love and cherishing from that relationship. Whilst in no way negating the challenges of living with dementia I am simply wishing to offer hope in the light of some of the findings from my conversations with families who agree to discuss in depth their changes as they try to live with the condition which frankly they would rather not have.  And lets be clear most of us would rather have cancer than dementia. So when dementia hits the shit many live in fear, resentment and general bewilderment.

I would like to share with you some of the profound insights which people with dementia have told me, in confidence, about the concerns they have for their loved ones. I think all to often we consider the negative aspects of dementia and the dominance this holds over marriages and family relationships. I think we need to think about a couple of things;

Firstly, people with dementia, regardless of the “diagnosed type”, frequently have profound insights into their condition and worry about their loved ones. Deeply. This may be difficult to express in ways which are usual for that individual. The ability to organise and get the right words out is deeply frustrating and carries with it the knowledge that their spouse or other loved one is trying their best to understand. Tolerance and a deep love are often the only sources of help, which can be stretched to the absolute limit and then some more. Individuals with dementia,  have expressed their deep appreciation and absolute love for their spouses and families but also their feelings of alienation and difficulty trying to make sense of conversations. Likewise spouses talk of the depth of conversations which are often limited to the simple decisions, their sheer emotional exhaustion and feeling of uncertainty in “doing the right thing . Combining these two outlooks and it is easy to sense the incredible tensions which surface not just every day but often every few minutes. Dementia in itself is very cruel.

Secondly, couples have spoken to me in ways which have led me to think that as a dementia researcher we may be missing one of the points about living with dementia. Instead of banging on about fighting and surviving dementia perhaps we need to consider that living with dementia is equally, if not more, about getting on with fostering loving relationships? We know dementia is tough and foul in itself as a condition. Couples have kindly shared with me the ways in which they have simply “gotten on with it”. This isn’t such a bad strategy to adopt: you don’t need to declare any diagnosis or adopt the activist stance.  Spouses with dementia speak of how they continue to support their loved ones by helping them though tough times, such as cancer treatments, with kindness and genuine words of love. Appreciation for each other and a cherishing of the everyday in the present.  No hero talk of battles or seeking the latest dementia diet plan, pills or reminiscence whatever but simply a decision to get on with living in the present.  No talk of reminiscence therapy or dwelling on past events but a looking forward to whatever the day hold. No dwelling on the future either. And what does this look like?

It means;

keeping up with going to the local allotment every other day for a natter and to share home grown delicacies

going for a daily walk, whatever the weather, to meet locals and ward of discontentment and isolation by general chit chat

enjoying the hair dressers who may not quite manage to complete the fringe cut

being there during the sheep sheering to give direction and help with the general advice giving, absorbing the heat, drama and smells of the sheer sweat, fleece oils and stench of the day

attending prayer groups to soak up the sense of being with others even if the conversation details are a blur but the prayers are comforting

being accepted in the local church choir even if the singing is lacking and questions are asked during the sermon

supported with shopping in the local supermarket by staff who are kind enough to get the necessaries and disregard the basket of oddities gathered in the basket

share the dog walking in the knowledge that the neighbours dog is clearly not Fido from several years ago but he is assumed to be so

regular shopping trips to enable the spouse to read the paper and sleep for an afternoon

All these things are “small” but not so small and incredibly help to maintain and help the relationships to flourish.

Despite dementia.

Couples affected by dementia are often marginalised yet for their relationship to continue to flourish often the kindness of others is the most valuable thing they can do to support these couples when the chips are down. Everybody can really help these couples and it is so simple. No need to worry about “if you’re doing it right”. Every couple help each other with all the challenges of later life; let’s help them by simply accepting that things may not always go to plan but in the grand scheme of things isn’t that part of living and dare I say being together?

Surely this is the nub of a dementia friendly community: getting on with it despite the changes and challenges. Acknowledge these wonderful people living in our communities by  kind words and accommodation. Let’s support all those who wish to continue in flourishing in  their marriages, families and communities.

 

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

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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

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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.