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.

 

 

 

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

 

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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…

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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.