Use of your data in research- New UK data protection law

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This post is intended for all the participants of the study; Scaling the Peaks. If you have taken part in the study then please read this notice. No further action is required.

It is necessary to distribute this additional information as a requirement of the New UK Data Protection Law.

Thank you for your time.


Use of Your Data in research – New UK Data Protection Law

Scaling the Peaks 2015-19

IRAS number: 188103

As a participant in a research study sponsored by the University of Nottingham we are providing you with some additional information about the use of your personal data, which is data from which you can be identified, as a new law for data protection has been introduced.

Your information will be kept strictly confidential, stored in a secure and locked office, and on a password protected database at the University of Nottingham.  Under UK Data Protection laws the University is the Data Controller (legally responsible for the data security) and the Chief Investigator of this study (named above) is the Data Custodian (manages access to the data). This means we are responsible for looking after your information and using it properly. Your rights to access, change or move your information are limited as we need to manage your information in specific ways to comply with certain laws and for the research to be reliable and accurate. To safeguard your rights we will use the minimum personally – identifiable information possible.

You can find out more about how we use your information and to read our privacy notice at:

The data collected for the study will be looked at and stored by authorised persons from the University of Nottingham who are organising the research. They may also be looked at by authorised people from regulatory organisations to check that the study is being carried out correctly. All will have a duty of confidentiality to you as a research participant and we will do our best to meet this duty.

Where possible information about you which leaves your home will have your name and address removed and a unique code will be used so that you cannot be recognised from it, however sometimes we need to ensure that we can recognise you to link the research data with your medical records so in these instances we will need to know your name and date of birth.  We will also need this information if we need to follow up your medical records as part of the research, where we may need to ask the Government services that hold medical information about you (such as NHS Digital, the Office for National Statistics, among others) to provide this information to us. This study, Scaling the Peaks, will not collect date of birth, so it cannot be linked with medical records.  By signing the consent form you agree to the above.

Your contact information will be kept by the University of Nottingham for 1 year  after the end of the study so that we are able to contact you about the findings of the study and possible follow-up studies  (unless you advise us that you do not wish to be contacted). This information will be kept separately from the research data collected and only those who need to will have access to it.  All other data (research data) will be kept securely for 7 years.  After this time your data will be disposed of securely.  During this time all precautions will be taken by all those involved to maintain your confidentiality, only members of the research team given permission by the data custodian will have access to your personal data.

In accordance with the University of Nottingham’s, the Government’s and our funders’ policies we may share our research data with researchers in other Universities and organisations, including those in other countries, for research in health and social care. Sharing research data is important to allow peer scrutiny, re-use (and therefore avoiding duplication of research) and to understand the bigger picture in particular areas of research. Data sharing in this way is usually anonymised (so that you could not be identified) but if we need to share identifiable information we will seek your consent for this and ensure it is secure. You will be made aware then if the data is to be shared with countries whose data protection laws differ to those of the UK and how we will protect your confidentiality.

What will happen if I don’t want to carry on with the study?

Your participation is voluntary and you are free to withdraw at any time, without giving any reason, and without your legal rights being affected. If you withdraw we will no longer collect any information about you or from you but we will keep the information about you that we have already obtained as we are not allowed to tamper with study records and this information may have already been used in some analyses and may still be used in the final study analyses. To safeguard your rights, we will use the minimum personally-identifiable information possible.


Silence is not always golden; the impact of losing your hearing aid…



Recent research evidence in the UK and America has shown that hearing loss has a direct impact on cognitive decline and dementia. In summary people affected by increased levels of hearing loss are more likely to develop dementia. This doesn’t mean that if you have a hearing loss you will get dementia. However, hearing loss is strongly associated with increased odds of developing dementia. Since dementia mostly affects older people, as does sensory losses such as hearing, then it isn’t surprising that many people with dementia also require hearing aids.

There are many reasons why people do not seek early advice about hearing loss; they may be unaware of the loss and over time those nearest to them have adapted to this. All sorts of personal reasons can be given including aid appearance, costs and difficulties using the hearing aids. Rural hearing aid users can find that there are seemingly overwhelming mountains to climb to access hearing aid support. One of the findings from this study has been that although the initial audiology assessment and fitting of aids is excellent; the follow-up and support is tricky.  Families praise the expertise and compassion of audiology professionals. Reconnecting and accessing the service after the fitting isn’t because of the audiology service itself, but because rural dwellers now find it more and more difficult to access the services, especially if they have no means of independent transport.

In many rural areas, CCGs are strapped for cash. Hearing services may be outsourced to private companies and/or remain NHS; this leads to confusion among patients who can find it tricky to obtain support, especially when services have changed hands. Same geographical areas may be served by several providers with contracts determined by the age of the patient (child/adult/older age). Local centres, such as GPs, can no longer hold spares for all hearing aid users and so batteries and cleaning tubes may require a trip further afield to collect. The patient has to learn to navigate between adult and older adult hearing services and their respective sites.

This may seem fine but for people with dementia and their caregivers the challenges this creates are multiple. No longer can a younger person with dementia access local GP centres for ongoing support or supplies such as batteries. This means that supplies can be accessed only at larger centres, frequently up to 20 miles away in each direction. Simple supplies such as batteries can be sent by post to the home address but many patients are not aware of this information. More complicated spares or replacements inevitably involve a visit to the central hub, located in the cities. This is one of the consequences of the closures of smaller general and community hospitals.

It gets incredibly complicated when hearing aids are lost, which is not that uncommon, in dementia. The person with dementia has to then apply for new aids and attend for a refitting. This leads to lengthy waiting periods with no effective means of communication and frustrations all round. Families with enough financial resource, resort to paying for new aids using high street chains or even online. Where finances cannot meet this then there are increased risks of strained relationships, increased risks of falls and general decline in cognitive function. It would make sense to prioritise people with hearing loss and dementia by responding to requests for ongoing follow-up and support, in order to minimise these risks of harm to individuals and carers. Carers may reach points of crisis and resort to shouting and pushing their loved one, from the sheer exhaustion of trying to communicate. A fractured hip, a breakdown in care, is far more costly to the NHS than a local health centre hearing aid refit consultation. In not only financial but also emotional and well- being terms.

These “bottom line” discussions are often raised by the families and care providers who kindly give their time to the study. These are not political rants but genuine expressions of bemusement and anger at the everyday struggles to access basic equipment. We are not discussing high cost experimental treatments which often attract media attention but the proven relatively low cost things which improve the lives of so many. As one professional stated: ” …we’re talking about the budget branded items in the supermarket of the NHS, not the elite supreme range. We need the tools to do our work and a say in how that is organised”.

Families tell me of the practical struggles of caring and how these are amplified by hearing loss. Voices become hoarse with constant shouting; eventually less and less conversation happens and so actions are carried out without the usual loving reassurances; frustrations set in. The person with dementia tries to understand and seeks to make amends or further reassurances.  The carer feels guilt at their compromised kindness and wonder at how they arrived at this point of  despair. A cycle of raised tensions and misunderstanding ensues. Some battles are left to one side as energies become spent on simply managing all those essential caring activities which  are reduced to endless rote commands. Communication becomes robotic with few moments for general chit chat or even a mutual moan as each become lost in silence.

Yet this cycle of disruption can be mitigated by steps to consider the importance of sustained support services, such as audiology. Rural dwellers and those who cannot travel long distances need their face to face services to remain local and accessible. People will not travel to acute hospitals in cities for seemingly none acute care; parking is tricky and public transport can be none existent.  Hospital environments are extremely intimidating frightening places for people with dementia. This becomes an impossible mission(s) and so often is delayed or abandoned. The habit of wearing the aids is lost; learning to use the aids will have to begin again if the aids are replaced. Audiologists know this yet they are often not heard in the decisions making processes to distribute funds across community services.

Glasses are worn by many; we go to the opticians and are often offered deals on multiple pairs. This is accepted as the norm. For those with dementia a “spare pair” are often secreted to “one of those places” (for safekeeping) until they are needed. Denture impressions are often given to caregivers to also keep in “one of those places” so that replacements can be made promptly in the common scenario of loss or breakage. Most of us loose our glasses; sit on our dentures;  mislay our hearing aids. Dementia can increase the odds of this happening although when and how often is less predictable. There may be clusters of multiple losses in a short space of time, possibly as a consequence of a change in the dementia trajectory or illness which increases cognitive loss. Services need to accommodate these rural dementia specific issues within their planning and not penalise services or individuals.  Let’s work towards a solution for ensuring that hearing aid support is considered a priority in dementia care. Sometimes the least visible stuff can make the most difference.

Dementia care is about planning for future events and mitigating them; we know lost and broken items are part of this. Integration of dementia care across services need to consider the rationale for relocation of core services and the accessibility of centralised hubs by rural families affected by dementia. It is necessary for maintaining the health and well being of families affected by dementia and all those professionals who provide support.

Its Snowing Again! Keeping the Community Running.



We’ve had snow again! Today, about 30cms of water is running across the roads in the High Peak causing localised flooding and cars to aquaplane. I know this because of a wonder community resource, called the Buxton Weather Watch, an internet site run by an ardent weather enthusiast who steadfastly keeps all those who have to travel aware of local conditions. This site is the “shop window” of the best of the community spirit which typifies the region. In the comfort of my home and work location, I can keep an eye on conditions and gauge if I need to change my journey plans. It provides  a wealth of information with links to local webcams such as the famous Flash stores where a guaranteed decent cuppa and a welcome for all waifs and strays awaits. So why mention a weather website and what has this to do with rural dementia?

This site acts as a community hub; it shares key information about local road and weather conditions with those who are living and working in the area. Advance warning is given of impending challenging weather. Updates are regular. During really poor weather the site goes into hyperactive mode. So at all hours, people are sending in pictures and details of road conditions, mishaps and missing people which are posted in real time by the site people. Colour coded messages are then posted with red capitals being the highest alert. The Buxton Mountain Rescue link in with their responses and it all seems to work well. More recently, we’ve seen the hard work of the various 4×4 enthusiasts and organisations who have come to the support of people, including those with chronic conditions who have needed medical assistance. A mother in premature labour was helped to the hospital by a farmer who cleared snow drifts to enable access. We’ve seen a couple of teenagers safely found who had tried to walk in deteriorating conditions. Alerts for people with dementia who may have become lost can be posted if necessary which all helps towards a prompt resolution.

Less transparent are the issues during poor weather which affect mobile signals and internet connections. In many rural areas these are often sporadic at the best of times. During extreme chilly weather it is not uncommon for mobile phone batteries to run low very rapidly, to fail completely or for the transmitters to become iced over or collapse. When this happens, there are no communication links so community workers have no choice but to check on vulnerable people in person. Their usual vehicles are not suitable for the snowy conditions and this is where the volunteer 4×4 members of the public come to the fore. Treks up to a mile on foot are not uncommon laden with provisions. Medical care, fuel, milk, bread and a cheery word will all be provided. Solid fuel tank levels will be checked and measures taken to ensure these will be topped up if necessary. Distant relatives will be contacted. Charities such as Age UK will offer reassurance as part of a complex chain of support.

In rural areas there will always need to be 4x4s; we cannot simply cast them as the villains of air pollution and strive to eradicate them. Currently we do not have any viable alternative solutions in these rural areas. They are part of this landscape and infrastructure for many reasons and that includes preserving life.

Most importantly are all those everyday heroes who give up the warmth of their homes to transport our key workers safely to respond to our neighbours  living in remote and rural communities. A huge thank you to you all.

Dementia Friendly Communities



Last night I went to an open meeting in a medium sized town in Derbyshire where members of the community were considering working towards recognition as a dementia friendly community. This scheme is operated by the Alzheimer’s Society and aims to promote awareness and recognition of dementia by individuals, groups, businesses and organisations. Basically the starting blocks are to undertake some form of dementia awareness training, such as becoming a dementia friend, and to make some pledge to actively change one thing for the better. The local independent pharmacist has trained all their staff as dementia friends and strives to explain things a little more clearly to customers as necessary. Likewise the small newsagent always finds time for a pleasant word with all their older customers and will help with finding that all elusive piece of cheese at the back of the cabinet. In many ways, the town is well on the way to achieving their status as a dementia friendly town. But the beauty and challenge, is that this race never ends as the process is reviewed yearly. Optional stickers for display are provided which have been shown to improve business since we all like to shop in places where we hope customer service will be compassionate. Each year, each organisation, sets a new target to achieve with the ambition to gradually improve year on year.

The number of people attending was fantastic with carers, businesses and some voluntary organisations present. Our local Alzheimer’s Society dementia friendly community worker, Helen, came along despite having a heavy cold. She had been invited by one of our local heroes who wanted to implement sustainable local change. We had a cuppa and a brief introduction and then set to work on some ideas for change in the town. We discussed possible areas of priority and also praised some of the good work already taking place. The local supermarket pledged to urge all their workforce to become dementia friends, the carer wanted to see better signposting for services and another group was suggested. Then we discussed next steps which included trying to determine potential members for a steering group. Our local hero hadn’t expected such a huge demonstration of support and tried to hold back the emotion as a large show of hands went up.

The steering group is necessary to enable the support of the Alzheimer’s Society Dementia Friendly support workers. These individuals offer ongoing support at every stage, from inception to development and establishment of the group. All too often such initiatives rely upon the good will and energy of single community heroes, who can be prone to serious burnout and emotional wreckage. A cohesive steering group with multiple members able and willing to delegate and deliver realistic goals is essential. The remit of the group will be defined by a process of local consultation which is essential otherwise the whole venture is meaningless.

The whole remit of dementia friendly communities is often ambiguous. What is it all about? I remain skeptical that entire countries can claim to be dementia friendly however laudable that may be. I do think there isn’t any one model of a dementia friendly community and that even between small regions, villages can be very different in their vision and what they know will work best for their community. Some will resist being formally identified as a dementia friendly community, preferring to take the “age friendly approach” or a “community for all” approach, yet in essence be very inclusive. Others will seek to endorse the full recognition process and seek to include all public service providers, businesses, organisations, churches and so on as much as possible by use of the logos and schemes.

Regardless of logos, badges or publicity the most important aspect to this is that all members of the community, who may be experiencing isolation because of the impact of dementia, will be able to (re)connect within the place they live and with friendly faces. There is a genuine risk that older people are isolated during the very stage of their lives when connections with others are so vital for a sense of well being; we need to seriously challenge the status quo which puts older people in places apart from other members of our communities. Let’s include children, young people, families, the middle aged and the newly/semi- retired and the more retired in the development of these dementia friendly communities. Then when we no longer need to think “is this inclusive or dementia friendly?”  we have reached the finishing line. This is what matters most.

The Rise of the NOTE (not over there either) among Rural communities


Sometimes it’s really so easy to convince ourselves that the current issues in the UK are down to Brexit, local policies and even the weather! Some of the issues are long standing and gain attention as tensions created by them steadily streghten. Rural housing in the National Parks is one such issue, which may not seem to be directly relevant to the study but nonetheless impacts on the destinations of care as people find their support needs increase.  I want to share with you a recent discussion paper about the issue of housing for older people in areas considered to be of outstanding natural beauty. For those of you living in the UK, you would be forgiven for thinking this was directly about the UK National Parks.  This paper considers a village sitting in a  National Park located in Hungry, but I think it is more powerful for this as most rural dwellers in the UK National Parks will recognise these housing debates by heart. What might be less apparent is the future potential impact of housing on older rural dwellers who live in the tourist hot spots.

In Hungry sits a small village, which by all accounts is something of a tourist magnet, for the beautifully preserved public and private buildings. However, as the local population ages issues have surfaced which threaten to invade the very essence of the tourist attraction and so the potential income source to the area. The type of tourism is classed as Heritage Tourism, which feeds the perceived need in visitors to experience history in all its authenticity including the built environment. Our ever increased desire for a quality day out is no longer content with a few historically preserved buildings but seeks the all encompassing  village life experience, probably with the option for authentic sounds and smells and staying in some sanitised shepherd hut to complete the dream. Gritty lead mining is transformed into a hands on experience much to the bemusement of ancestors. However,  on a more serious note, there are very few opportunities for local residents to express the impact of this activity on their identities and communities. Subtly these properties are also hotbeds of rising commercial value with potential investors considering how many concealed holiday lets can be configured behind the 3 foot deep walls. Real time living is somehow expected to function within the shadows of such heritage tourism from at least March to October each year. In short places become off-limits to local residents in subtle insidious ways.

The paper from Hungry includes the following statement: “The making of heritage and tourism can carry positive implications for local communities such as a sense of locality and pride and entrepreneurial activity, economic growth whilst the benefits for local community can be very limited and give rise several negative social impacts and conflicts (Herzfeld, 2010; Silva, 2014). Herzfeld (2010) …. discussed the consequences of heritage conservation and gentrification together. He demonstrated that the state-sponsored historic conservation with public authority driven gentrification almost always bring the tragedy for locals including the escalation of prices resulted from real estate speculation or new place functions (e.g. sacred space) with off-limits to ordinary residents.” Csizmady Adrienne and Csurgó, Bernadett (2017). The references can be found on Google.

These consequences of heritage tourism and gentrification are illustrated in the article and also described to me by residents. Many of ageing residents happen to live in and among the  centre of the most historic dwellings; some of them live within them as proud descendants of umpteen generations in the same house. Most of these homes are subject to stringent planning laws and conservation criteria. Some of these homes are now being adapted to enable the occupants to  independently get out and about and so carry on with the usual stuff of life. This would normally be considered unproblematic except that some of these adaptations are visually intrusive and include handrails adjacent to steps, ramps for wheelchairs and the emotive issue of dedicated parking spots. However, the issues of visibility create a tension with the aesthetic sensibilities of the imperatives to maintain the Heritage tourism and gentrification status quo. Many of these adaptations are not permanent and so removable in the future. Internally many of the properties require upgraded measures to help conserve energy and maintain adequate warmth in the winter months, because when the tourists and second home owners have dwindled the snow arrives. Arguably these properties are not that conducive to modern living, especially as people now live longer with chronic conditions, with their quirky internal configurations, low ceilings and are impossible to insulate adequately.

They are home to many older people. And home is where the heart is.

The financial and emotional impact of planning applications, refusals and objections to obtaining adaptations,  which convince locals to leave their homes and localities is rarely documented, let alone researched. Worryingly it is almost accepted practice in the UK, promoted by local authorities. Those with the smallest voices, such as the very elderly with no advocates, are often posited as selfish or even lacking mental capacity to decide for themselves if they refuse to move. Why are these individuals being marginalised in their own communities? Why is it considered reasonable to suggest that they have to move, often way beyond their local places? We wouldn’t expect a young family with a disabled child to move on the basis of needing a marked disabled bay or visual adaptations to their historic property so why are older people expected to move when their needs for say a contrast painted handrail and ramps jar the imperative for the authentic village experience?

So why did this Hungarian account resonate with me? Firstly it confirms and concedes that there are very real tensions between the local residents, who are not to blame for wishing to remain in their own homes for as long as possible, and the local authorities. Secondly it highlights the rhetoric of those in power who thinly veil their views that all would be sorted if only these very same older residents did “the responsible thing” and moved to more accessible, fuel efficient and functional homes before they became too dependent on others for their care. Their picturesque homes would raise considerable equity to pay for future care during the downsizing transition (thus saving future statutory costs) and preserve the visual image of the rural idyll with no stark reminders of any modern day reminders ( with mobility needs by the installation of grab rails or ramps) which obscure the heritage experience.  Nostalgic dreams of the rural idyll must not dominate the imperative for common sense decisions necessary for rural older people to remain in place.  Here, as in Hungry, picture postcard imagery grapples with the everyday messiness of grab rails, ramps, key boxes and mobility vehicles. Thirdly, older people still contribute to their local communities as active citizens; they are not passive actors in some heritage soap opera but key players in all that makes a community alive and thriving.

If we are to really address the housing needs of rural older people living in National Parks, there needs to be a concerted effort to enable existing homes to be adapted and  local fully accessible homes to be built within the immediate vicinity of these rural dwellers. It is not acceptable to continue to push people out of area on the basis of a lack of accessible affordable housing during their most vulnerable time as health deteriorates. Currently people have few choices; they are ageing in place in properties which hold deep emotional attachments. Support needs to be given to enable such residents to remain in these homes which are often laden with ties and memories down generations. Some of these people may consider moving to new builds if they can remain living in their communities and independently. Architects and planners can come together to devise ground breaking designs which will in time become in themselves historic dwellings. Change is necessary to preserve the future of rural communities.


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….


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.