Dementia and Human Rights by Suzanne Cahill, Policy Press, 2018, ISBN 978-1-4473-3140-7.

I was sent this book with a request from the author for a review. It’s a really timely contribution to a rapidly developing area, so it is useful to have an up-to-date account of some of the legal and practical complexities.

Many readers of this blog will be aware of how different perspectives of dementia have emerged in the last 2 or 3 decades, moving from a view of biological determinism that ignores the person who has the condition to social and person-centred conceptions of dementia. These of course give more options in terms of how the person themselves and those around him/her can respond to a diagnosis of dementia and how to live with it.

More recently, strong arguments have been made for considering dementia as a disability and therefore bringing it within the scope of the United Nations Convention on the Rights of People with Disabilities (UNCRPD), which was published in 2006. The development of the UNCRPD reflects the growth of the disability movement in the preceding years, which has also seen the growth of disability studies as an academic discipline. However, the disability movement has historically focused mainly on physical disability, with the consequence that dementia was not present in the drafting of the UNCRPD, and to some extent dementia has had to play catch-up to argue for consideration under the terms of this Convention.

Suzanne Cahill’s excellent book places all these developments in context. The reader is perhaps grateful that she and her legal colleague Eilionóir Flynn, who wrote one of the chapters, have read a lot of the rather dry material for us. The question of the rights of people with dementia are going to have an increasing impact for all of us. Most countries have now ratified the UNCRPD, which means that they have a commitment to ensuring that their policies and legislation reflect the Convention’s principles.

Human rights is of course a massive topic but, in short, there are five main categories of rights: civil, political, economic, social and cultural. Civil and political rights are referred to as negative rights, meaning that they do not require any special action to introduce though they do need to be protected against violation and abuse. They are therefore relatively easy to observe as they don’t carry many resource implications. The other types of rights are referred to as positive rights as they require an active contribution from others to deliver them, e.g. social rights for disabled people require that assistance, access, suitable transport, etc are made available. For dementia, this would also include personal care. Governments tend to drag their at heels at regarding care and support as rights, since they are often reluctant to pay for them and certainly reluctant for anything of this kind to be enshrined as a right.

The book takes us through several of the Articles of the UNCRPD that are most relevant to dementia and makes a clear case that dementia should be regarded as a disability (without denying any other aspects of it such as its biological basis). While the existing UNCRPD, influenced as it has been by the physical disability and learning disabilities lobbies, focuses very much on independence and life in the community, the author also explores how rights apply to the care home setting and, drawing on Article 19, argues that people should have a right to live in a place of their choice including a care home, should that be their preference.

Perhaps the most thought-provoking chapters concern legal capacity and equal recognition before the law. This is covered in Article 12 of the CRPD and woven through the book. People with disabilities have the same rights on an equal basis as other at all stages of life. This is inviolable and therefore a person’s legal capacity cannot be removed from them no matter how severely disabled they may be. Ultimately, this means that substituted decision-making is not consistent with the CRPD. Instead, the emphasis must be on assisting the person with disability to exercise their legal capacity, to making every attempt to ascertain their wishes and preferences. This replaces the notion of acting in their best interests, as this is seen as patronising and in breach of their legal capacity. Obviously this may be challenging in the case of someone with severe dementia, but advance statements can help. The implications of this way of thinking for the Mental Capacity Act are not yet clear, but the important message is that the person with dementia is never removed from the decision-making process.

I expect that law and practice will need to change to reflect these issues. With it comes a need for training that is far more rights-focused than is currently the case. Reading this book will be a good start for anyone committed to promoting the dignity, humanity and independence of the individual diagnosed with dementia.

Tom Dening

16th August 2018

The Elder Interview: Dr Neil Chadborn, Research Fellow, University of Nottingham

Integrating Care: Finding Commonality Between Organisations to Implement Best Practise

Neil Chadborn’s research focuses on inter-professional and inter-organisational aspects of integrated care for older people. He is currently involved in the PEACH project, to understand how a Quality Improvement Collaborative (QIC) can help organise healthcare services in care homes – and has an Alzheimer’s Society Knowledge Exchange Fellowship, exploring how services within a community can work together and with people living with dementia. We talked to him about the challenges of providing truly integrated care and why networks may provide a more inclusive way to enable people to access support according to their needs.

Why are the inter-professional and inter-organisational aspects a key research focus for you?

My background is in public health research, and that gives me a certain independence – doctors and nurses, for example, come at research from within a tradition of their profession, and this professional perspective shapes their analysis and interpretation. I aim to take the individual person’s perspective (along with that of the family or carers), to understand health issues.

As I am a ‘step away’ from the professions, I can explore how the different agencies interact to provide team-based care – and how this is shaped to the individual needs of a person.

I am constantly on the look-out for how professionals put into practice the notion of ‘person-centred care’. There is often a gap between the ambition of policies and how an individual person experiences this.

While members of the public may be participants in our research, we are also keen to invite people to have an input in the design of the research itself. This includes inviting them to the university to have meetings with us to discuss the research process, involving them in conducting the research itself, or even involve them in helping us to do the interviews rather than being interviewed themselves, or interpreting the data.

Spending time researching technical questions about organisations may lead to losing focus of the end goal of improving the care of people. The importance of this ‘patient and public involvement’ approach is that it avoids this academic bubble – by involving people from the outset, there is a real emphasis on doing research that will have a practical impact and will be relevant to today’s problems.

What does this independence bring to your research?

In PEACH study, the care homes research I am doing, I am looking at the problem of continuity of care – and it’s an excellent example of the benefit of independence as a researcher.

There is currently a national policy drive to improve healthcare in care homes, which has previously been of variable quality. One of the problems is that a person with complex needs may require input from several professionals; geriatrician, social worker, physiotherapist and GP.

We are investigating how best to coordinate the activities of these different professionals. While each professional could conduct research on this problem, they each bring their own perspective – the geriatrician may have a hospital perspective, the physiotherapist may not have expertise in medical conditions.

As a non-clinical researcher, I try to consider the perspective of the person and their experience of being cared for by several professionals. I aim to understand how to take the best from each of those professions, to coordinate around the needs of the individual.

But this has to work at the care home level too - you can put time and resources around one individual, but somehow you also have to make that work for the whole care home to make it practicable, so there’s another level of organisation and facilitation that is needed.

Is there still a silo mentality in health and social care that prevents real integrated care?

Yes and no. Words like ‘silo’ and ‘culture’ are easy to use as blame words, which doesn’t help us to progress or improve things. In a care home, there may be up to four or five different organisations involved in the care of one resident, and we can’t avoid that - we just have to make it work.

Technology is one way that we can help address this, for example – a significant problem is that each organisation has its own database and system.

In Nottinghamshire, there is an NHS organisation that is drawing together the different systems so that this data can be shared across all these different organisations. That is a way of bridging those silo boundaries and enabling team-based work to be efficient.

At what level does change have to happen when we look at developing more integrated, multi-disciplinary care?

We can think about three levels of change; policy, organisational processes and the care of an individual and it’s helpful to look at it in that way. Every practitioner across the board will agree with the aim of improving care for the individual – so that is a commonality.

Understanding the great variety within communities – whether that is ethnicity or gender, or geographical factors - implies that services should be developed according to these local factors. So that is a driving factor for these professionals and organisations to think, ‘how do we meet the needs of the individuals?’

So starting from that level of the individual we can then extend out to the care home –  to ask how do we meet the needs of everyone in this care home? Individual- to population-level focus is a way of trying to find commonality between professionals and organisations as a way of prioritising how different agencies work together.

In the PEACH study, we’re using an approach called “Quality Improvement Collaboratives”. Within a geographic area, we’ve got together the different organisations and professionals who work in care homes; the NHS managers, GP, care home manager, social worker, a geriatrician and not forgetting family members of residents.

They discuss how they can work better together - whether new processes or technologies are required. Within the study, we've then brought together four of these geographic areas into a “collaborative” so that they can share their best practice and key findings with similar groups in other areas.

While they work on these challenges, the additional benefit is that some of these silo boundaries automatically break down; so the meetings may be strategic, but the team-spirit that develops may filter out to the real-world practice in the care homes - ideally alongside ‘technical’ solutions.

It’s a bottom-up, organic approach and there is a real benefit to this – because we know from research that if you have a strict policy implemented nationwide it often fails because one particular idea either doesn't fit a locality or different organisations have different priorities and can’t quite address the policy at that time. This is a flexible approach that addresses that local buy-in and allows for local priorities and challenges.

Complexity is the big challenge, and appreciating this is the first step to understanding where we can best focus resources. It’s also about recognising what is currently working.

Again a fundamental problem with trying to implement one strict policy is that it doesn't recognise the strengths or benefits of what is already working well; it’s either trying to duplicate, replace or change those beneficial assets or relationships.

Are there any unique challenges when it comes to providing integrated dementia care?

I work at the Centre for Dementia within the University of Nottingham - and the work I have been doing recently with an Alzheimer’s Society Knowledge Exchange Fellowship is about trying to improve coordination of care to improve support for people living with dementia in the community (see blog article).

In The Netherlands, they are developing a network approach that brings together all the practitioners in the community to support those with dementia.

Together with a colleague in Nijmegen, Marjolein van der Marck, I’m looking at how all the different community services and resources (including charities as well as NHS and social care) can be part of a network of knowledge and support.

In turn, can general services for older people be adapted to be more inclusive of people with dementia? How might this approach be implemented more broadly in the UK?

In this country, this kind of network is more reliant on the third sector at the moment (charities and informal organisations). The Dementia Action Alliance, for example, is bringing together these kinds of support organisations and doing the work of building those networks to make connections more visible. If we ask “how can we make our community dementia-friendly?” I think local networks are the best approach.

The most significant challenge in care homes, as well as communities, is that people don’t have the information to access services or find out whether a service is right for them. A network could help people to find the services that are right for them - to meet their individual needs.

There’s a lot of talk in health and social care about pathways at the moment as maps to enable people to be able to access help and support and that is great. However, a ‘pathway’ will only be focused on one thing – you might be on the dementia pathway but if you also have diabetes, should you be on a diabetes pathway as well, or instead?

Where pathways might not deal well with the diversity of people’s needs or community, working to develop networks may, in the end, be a better and more inclusive way to enable people to access the right support according to their needs.

The original version of this interview can be found here: https://www.elder.org/the-elder/integrating-care-finding-commonality-between-organisations-implement-best-practise/

As we reach the middle of July, the covers are back on at Wimbledon and the festival of football that was the World Cup has reached its conclusion but for our nine Challenge Dementia Finalists finalists things are just hotting up as they enter their second month of the six month development and testing phase of the prize: https://challenge-prizes.essex.gov.uk/

In May this year a judging panel made up of national experts and chaired by Professor Alistair Burns, shortlisted nine ideas from over seventy national applications. Each of the ideas shortlisted was identified as having the potential to change the day to day life of people living with dementia and to help keep them connected to the people and places around them.

Between what is turning out to be a scorching July and the end of November this year, our nine finalists will be working with people living with dementia, their families and care providers to test, develop and evaluate their prototypes before presenting their business cases back to the same judging panel in the hope of securing the £100,000 investment on offer.

Each of our nine finalists has written a blog post that charts their journey through the early stages of the prize. To find out more about each of the finalists, their ideas and how they are progressing follow the link http://challenge-prizes.essex.gov.uk/meet-the-finalists/

Essex County Council are the first Local Authority to establish a Challenge Prize programme to seek new and innovative ways to tackle existing problems. Delivered in partnership with the Alzheimer’s Society, PA Consulting, techUK and the University of Essex the prize has been widely supported by organisations nationally and held up as real opportunity to challenge the normal commissioning and procurement processes.

Nicole North and Benjamin Mann who run the programme for Essex County Council said ‘This is our second challenge prize and our first national search for ideas. We have been overwhelmed by the support of people from across Essex who live and work with people living with dementia. Without their involvement and backing we would never have been able to create such an ambitious opportunity’

To find out more about the thinking behind the Challenge Dementia prize visit the Essex Challenge Prize website or contact Ben and Nicole at [email protected]

Photograph features judges for the Essex Prize. For more details see: https://challenge-prizes.essex.gov.uk/judging-panel/

Appearing in photo from left to righ are: Zena Aldridge (Admiral Nurse Research Fellow); Karen Harrison Dening (Head of Research & Publications, Dementia UK); Sue Lister, MBE, (AWOC) and Ann Murray (AWOC).

Childlessness is the state of people – men and women – not having children. Childlessness may have personal, social or political significance; some people make the decision not to have children; it is estimated that the majority of lesbian, gay, bisexual and transgender people do not have children. Naturally there are researchers and theorists that are inquisitive about this human phenomenon. The researcher Thomas Baudin and his colleagues (in 2015 study) took a sterile and practical view in stating there to be several ‘categories of childlessness’:

• Natural sterility which randomly affects an individual(s).
• Social sterility, which can include poverty driven childlessness, or an endogenous sterility where fertility has been affected by poor living conditions.
• People who are childless by circumstance and/or choice; this could include people who are childless because they have not met a partner with whom they would like to have children, decided too late to have children so affected by advanced maternal age, or because they suffer from certain medical issues, such as endometriosis that make it difficult for them to conceive.
• People who are childless by choice; deciding not to have children is a process that takes place in the context of other life events, particularly partnerships.

Further, they go on to say that the first three categories can be seen as "involuntary childlessness". With the fourth often called "voluntary childlessness".  Now I am sure many would argue that this is perhaps a simplistic view and that there may be many more reasons and rationales for childlessness.  However, that is not the purpose of this blog but rather to consider some of the long-term issues following a decision not to have children.

Now I can wax lyrical about statistics of an ageing population, likewise too the numbers of people living into old age and now ‘old, old age’ or the ‘oldest old’ (as the original term does not factor in that many people are now living beyond what was originally perceived as old age). However, my nursing practice has taken me into the field of dementia for over 35 years, and latterly into researching issues of palliative and end of life care for families affected by dementia.  Gloomy you might say but I have met some wonderful people along the way; heard some joyous stories (and some very sad stories) but it is these stories of people’s lives that are incredibly rewarding to me.

From the instant we are born we are all ageing and will all die at some point – this is inevitable and something all human beings have in common. However, as we delve deeper into the similarities and differences of human circumstance, the amazing variation of individuals and their circle of families, networks, interests, as well as cultures and ethnicities, become apparent.

I met two amazing women last week who are ageing without children (their description, not mine) who campaign and support individuals that are ageing (including those that have dementia) who do not have offspring or the support of children. AWOC York is an inclusive group and welcomes all those older individuals who do not have the support of nearby offspring. For example, their children may be disabled or have died, or moved away, or they may be estranged from them, and also those who chose not to have children or don’t want to be a burden on their children.

Sue and Ann told me the startling statistic that one in five people over the age of 65 are registered as childless.  However, as an Admiral Nurse I often see families affected by dementia accessing the lion’s share of support with families expected to ‘fill the gaps’ that are not provided by health and social care.  So where does that leave the older person with no children to rely on? Ageing Without Children (AWOC) founded by Kirsty Woodard has Sue and Ann to thank for their York branch. This group is just one of the couple’s activities: Sue established the York 50+ Festival that, on an annual basis, celebrates old age and gathers over 100 events on many related and pertinent issues, “No Kidding” by their Real People Theatre on the theme of ageing without children being just one of many.  Their women’s theatre company has also toured with “Dementia & Me” for the past 6 years – it acts as a springboard for audience discussion and the sharing of experiences. I was blown away by their tireless efforts and the wide range of activities which bring attention to ageing and dementia. Why not take a look at their websites and perhaps even attend one of their many events?

Ageing Without Children: https://awoc.org/

The Real People Theatre Company: https://www.realpeopletheatre.co.uk

York 50+ Festival: https://www.eventbrite.co.uk/e/york-50-festival-dozens-of-events-all-around-york-over-a-two-week-period-tickets-34768505536

Dr Karen Harrison Dening / Zena Aldridge July 2018

About 65,000 people experience a hip fracture each year in the UK. This is the biggest single cause of major trauma and the cost represents about 1% of the NHS budget. Hip fractures are much commoner in older people and having a hip fracture is often a turning point in someone’s life.

As hip fractures happen suddenly, people are admitted to hospital urgently. They may be quite unwell with blood loss and dehydration. Often, after they have undergone surgery, they may have an episode of delirium. And sometimes, family members trace back the onset of their relative’s dementia to when they broke their hip and were in hospital.

We think that what happens with the brain in hip fractures is relatively neglected. We tend to concentrate on mending the broken bone, and on making sure that the person’s chest and heart are ready to cope with having the anaesthetic for their operation. The brain doesn’t get a look in. This is unfortunate, since the state of the brain is obviously really important in determining the subsequent outcome. If you are confused, it is harder to start walking again, so you may be discharged to a care home rather than your own.

When a person falls over, as well as breaking their hip, they are very likely to hit their head. This may cause a brief period of concussion but this is easily overlooked amongst other things that are going on, such as the pain and distress of the person who has fallen. Or the concussion resolves by the time the ambulance gets you to hospital, in which case no-one pays any attention. During the time before, during and immediately after surgery, there may be various other events that affect the brain, for example, if there is a lot of blood loss then the supply of oxygen to the brain may be reduced. Or there may be emboli – that is, small fatty particles dislodged from the fractured bone, passing into the circulation and reaching the brain. Or the person is still concussed from hitting the pavement hard.

Therefore, we think that the brain is being neglected in hip fractures, and we propose to do something about it. This could involve reviewing the research literature to see if other people have published about this issue but more importantly putting more emphasis on protecting the brain than currently happens. We have reason to believe this could make a big difference.

Jay Banerjee and Tom Dening, June 2018

As I go about my ‘ordinary, everyday life’ - when not wearing my Dementia UK hat – I still seem to try and view the world through eyes that seek the most ‘dementia friendly’ of aspects.  I cannot help it.  Whether it is when I need to visit a public toilet – would a person with dementia feel able to use this toilet with ease? Is the toilet easily distinguishable from the white, designer tiles? Whether it is when I am in an airport departure lounge and look with dismay at the plethora of signs – how would a person with dementia navigate this setting when I am having trouble! What simple changes could be made to help them navigate their way to Majorca successfully? Or whether it is in the local cinema – how would a person with dementia manage to use these stairs when the lights are down and the film is in full and loud flow?

This approach to viewing my world surprises me occasionally as my scrutiny and questioning extends and expands across many settings, situations and events, so I feel that little escapes my eye. However, I was taken by (pleasant) surprise one day.  It was a Thursday, a day of annual leave and I was in my local market town of Southwell, Nottinghamshire, working my way through a series of mundane chores that looked like they would keep me busy until lunch time.  I had a parcel to send; some expensive (and probably completely frivolous) item of clothing that did not fit (and was quite inappropriate for a woman my age) so I wanted a refund.  As I stood in the queue for service I slowly became aware of a conversation that was being held across the shop between the post-office manager and a frail looking elderly lady.  The post-office manager was in the throes of advising the lady of the day, she believing it was Tuesday and pension day. The way he sensitively handled the whole conversation was awe inspiring.  His approach to communicating with this lady, who obviously had some form of dementia, was both skilled and empathic.  He orientated her to the day being Thursday but also sensitively reassured her that she had in fact collected her pension on Tuesday and that he knew this because he had served her. He then carefully steered the discussion to talking about every day and newsy issues in a very successful attempt to allow her to feel comfortable with him and safe in his explanations and in turn less distressed about her need to collect her pension.  The way he handled this conversation would leave many professionals working in dementia care in awe of his skill, sensitivity and with careful personal investment.  He obviously had this type of encounter with her on a regular basis.  As I left the post-office I saw her walking contentedly down the main street, occasionally stopping to look in shop windows.

I was so moved that I contacted the post-office customer services to ask if staff were provided with any training or education on dementia (essential given the average age of the regular post-office customer), only to find out that it was next on the list after mental health awareness.  Being dementia friendly is not about training, clearly.  It is about the ability to relate to the person, whatever their disability, whatever their issue.  Therefore I take my (Dementia UK) hat off to this post-man – you are just the ticket.

This article first appeared on the One Post Office website: https://www.onepostoffice.co.uk/ 

There is much debate on when is the best time to offer advance care planning to people with dementia. I would say as soon as possible after the diagnosis of dementia is made.  Many professionals feel that getting people with dementia to start thinking about their end of life care wishes is both too soon and insensitive within the diagnostic process. Planning for end of life needs to take place early in the course of the disease process, while the person has sufficient mental capacity to consider their preferences and make decisions, not the focus of this blog, but a timely diagnosis of dementia whereby they still have capacity to make plans for their future is essential.

In my research and studies I have found families affected by dementia only too willing to engage in such discussions, so who is the conversation difficult for?

Good, effective communication is essential in enabling advance care planning for anyone with a life-limiting condition but perhaps even more so for people with dementia.  Communication is a two way process but in people with dementia their ability to communicate with others and to receive their communication becomes increasingly difficult as the condition progresses.

So there are several tips and pointers that may help you to see things from the perspective of the person with dementia and their families:

Give me time…..

1. It may take me longer to process what you are saying to me and to think of their response - give me sufficient time to respond to you. Only ask one question at a time and try to avoid open ended questions as these can confuse me further and limit my ability to respond to you. Some people mirror what I say (repeat back to me) to confirm what it is I am saying.  This is helpful to me as confirms with me that I have been understood and also to feel in control of the conversation.

What is important to me is….

2. Ensure a person-centred approach try and help me to describe my values and preferences; this is a good way for you to start a conversation on advance care planning; what is important to me (and my family); my personal history, likes, strengths, beliefs, etc.  This can also help when starting to think about a Lasting power of Attorney.

How you should approach me….

3. Face me directly and make good eye contact with me, this gives me every opportunity to understand you are focused on me and helps me to communicate. Please use short, clear sentences with me that are free of jargon and ‘clinical speak’ and use language and words that are familiar to me.

Yes, I have a family but….

4. I may, or may not, wish my family carer/member to be present; ensure you ask me and never assume.

Familiar space….

5. Ensure the space chosen to have the conversation with me is quiet, calm and free from distractions. Actually, my own home or familiar surroundings is best.

Actions speak louder than words….

6. Be aware of and maximise upon your non-verbal communication: tone of voice, facial expressions, hand gestures, etc. These will all help me to better understand what is being said to me.  Also be an ‘active listener’ and be fully attentive to my body language and expressions as well as what I am saying to you – sometimes they may not convey the same meaning.  Lastly you can use other ways to communicate with me if I am finding things difficult – try word cards or pictures (e.g. www.talkingmats.com/).

Other useful resources

A useful resource to guide into what to ask and how can be found in the NCPC brief guide on Difficult Conversations for Dementia: www.ncpc.org.uk/

AFIRM is a framework to guide professionals in holding difficult conversations and to use these as opportunities to discuss any apprehensions or queries the person with dementia (and/or their family member) may have.

Acknowledge the persons concern or questions;

Find out what the person knows about the condition;

Immediate concern(s) addressed by providing adequate information within the scope of your work; Respond to subsequent questions by providing accurate information within the scope of your work and a

Meeting suggested to discuss their concerns with significant people, such as, a clinician, care coordinator, GP, family member(s), legal representative, etc. HSE. The National Dementia Training Programme. https://www.hse.ie/eng/about/Who/ONMSD/eductraining/dementiaeducation

Admiral Nurse Dementia Helpline. If you have any questions about dementia or if you need advice and support from an Admiral Nurse please contact our helpline: Telephone 0800 888 6678 or email: [email protected]

Do you want to make a lasting impact on the lives of 850,000 people living with dementia in the UK? Do you want the chance to win £100,000 by developing a solution to support this growing challenge? Then you could be part of the next Essex Challenge Prize.

At Essex County Council we know we have to do things differently if we are to meet the challenges facing residents head on. And that’s exactly what we are doing. We have the privilege of leading a programme of work – Essex Challenge Prizes. Challenge Prizes are a pretty innovative way to commission for outcomes. They recognise that although we can be clear about the problem, there may be people out there from a diverse range of backgrounds with interesting ideas which we would never have thought of or funded through a more traditional route.

The 19th January saw us launch our second prize – Challenge Dementia. 

Challenge Dementia is a nationwide search for ambitious and innovative ideas that can support people to live well with dementia and remain connected to the people and places around them. The prize is open to anyone – individuals, groups, businesses, partnerships – who has an idea and we are keen to hear from people close to the problem, or people from an entirely different background who can bring a new perspective.

So, why dementia?  Whilst we have both been touched by dementia first hand through our families, neither of us have a professional background in health or social care. So for the past six months we have been out and about talking to a range of amazing people who are living with a diagnosis; caring for a loved one; volunteering; or working in this field.  This has helped to shape the prize and give it its focus on how we can support people to remain connected and maintain their sense of identity.   We heard time and time again how people’s worlds get smaller every day and the value people place on those connections with the people and places around them.  We have been struck by everyone’s excitement and openness to the prize and a recognition that we need to continue to look for new and innovative ways to support people living with dementia.

Our day jobs here at Essex County Council in the Corporate Strategy Team are very much focused on understanding issues and identifying possible solutions. This has been such a different experience for us, as in this process it’s not for us to come up with solutions. That’s for you to do. Instead our role, along with some fantastic support partners, is to provide support. Up to ten shortlisted finalists will be given the opportunity to work with a range of sector leaders including Business Mentors from Tech UK as well as PA Consulting, Alzheimer’s Society and the University of Essex. In addition to the non-financial support, finalists will receive a micro-grant of £5,000 each to develop and test their idea with people living with Dementia over a five month period, before presenting their Business Case in a Dragon’s Den style pitch to a panel of national judges who will decide who received the £100,000 prize in December.

The deadline for entries is the 13th April.

We are really excited to see what ideas we receive and the potential impact they will have.

At this stage we are looking for ideas with potential rather than a fully developed business case. If you’d like to find out more, do get in touch with us via our website (please visit: http://challenge-prizes.essex.gov.uk/), newsletter (https://public.govdelivery.com/accounts/UKESSEX_CHALLENGE/subscriber/new), or e-mail us at: [email protected]

And we hope to update you all in May once our finalists are announced.

Benjamin Mann and Nicole North

Essex Challenge Prize Team

Essex County Council

The title of today's blog is not just a rallying cry to encourage fellow Dementers and their Carers to have as positive an approach to each day as possible. It is also, a statement that many may agree with and see as being obvious. However, where I am coming from in relation to this matter is that, when one can not operate in the way one was able a few years ago, it is easy and in many cases understandable, for the individual concerned to give up, not only on things that they can no longer undertake, but also on aspects of life that they are both physically and mentally capable of doing. It is therefore, I believe, important, in the first instance, that the Dementer and their Carer make every effort to ensure that they both undertake as many tasks, both physical and mental, as possible.

There may be positive aspects and pleasant surprises, for all concerned, if the positive "Do what you can, while you can" approach is adopted. This positive attitude and outlook should also underpin the approach and attitude of any health professional dealing with and being responsible for people with Dementia. They, like us, should be examining the opportunities that Dementia may provide, however brief, for people with the disease to continue to develop their potential, within the confines / limitations the condition presents. This is not to deny the, current, unstoppable advancement of the disease, but rather, to maximise the potential "good life" for both the Dementee and their Carer.  This "Good Life with Dementia" should be given the opportunity to flourish for as long as it can, to the benefit of all concerned.

The situation with my lovely dad is becoming untenable. ‘Becoming’ is probably rather too tame a word for it – things have changed rapidly over the last nine months and I feel like we are dealing with a runaway steam train (dad would love that analogy) about to hit the buffers. The problem is: how much track do we have left before we hit them?

Christmas was Christmas, but after that it was downhill all the way.

February saw a return of the bladder cancer that has now been treated three times, but this new growth is a different type that would normally require nine sessions of chemotherapy on a weekly basis. Simply taking a biopsy resulted in a rampant infection and an emergency hospital admission, followed by a twelve-day inpatient stay. Continence problems are becoming more frequent. The urology team feel that dad is too frail and susceptible to further infections to be worth risking this treatment. We are sitting on a tumour-timebomb, and when it roots down it could spread quickly.

Dad’s eyesight has also deteriorated badly (he is registered partially-sighted) and he can no longer see to use a bank-card machine properly or to write a legible signature on a cheque. With me being the nearest relative (at 200 miles distant) it is difficult to put financial safeguards in place yet give him any independence. He was also sadly targeted by fraudsters in June, and was persuaded to go to his bank for a very large sum of money. Fortunately the bank were vigilant and rang me as one of the Power of Attorneys, and another emergency trip down south to provide support and to secure dad and the house was necessary.

The third strand of dad’s needs he classifies as ‘confused-dot-com’! If he was capable of making purchases the advertising chaps and chapesses would be really pleased with themselves. Unfortunately their witty slogans simply serve as a humorous way for us to talk about his Alzheimers without using the ‘D’ word. And the confusion has certainly got a lot worse. Just last week we had all three daughters and a friend of dad’s from church and the local vicar all searching for his missing dog only to find that she’d spent the day at her normal dog-grooming appointment. Phone calls and emails were sent from as far afield as Australia and southern France, dog wardens were consulted, and walking routes and the local footpaths searched. It turns out that the carer handed the dog over to the groomers and either didn’t tell dad or he didn’t remember – he simply told us all that she was missing. When she was returned later he couldn’t work out how she had got back.

This brings us to the fourth strand of the problem – the care agency is no longer to able to provide the help that we ask for. Firstly, they simply don’t have enough carers on their books to cover the visits that we have requested, and dad regularly has to get up without help or put together a meal (usually cold, and sometimes out-of-date) if the carer is scheduled too late for his mealtime. Secondly, the communication between the administration side and the carers is somewhat chaotic and so far this has meant that dad missed a flu jab appointment and two chiropody ones. These are the ones we know about. In addition the finance department cannot sort out their invoicing and cashed two payments for the same invoice on one occasion.

Some of these problems are typical of care packages and others may relate to the agency we use, but they are not easy to identify or handle from between 200 and 3,000 miles away. Dad – here I can’t resist some writerly lingo – is an ‘unreliable narrator’, and it is hard to ascertain what is happening and why. It is time, surely, to consider other options.

So we are. We have interviewed a live-in care agency, spoken to other agencies about adding in care visits alongside our existing one, and, finally and in desperation, talked to the wonderful residential home that is local to me. They have previously offered a respite care bed but dad chose not to try it out. But maybe the winds of change are blowing as, for the first time ever, dad recently asked a question about what would happen (to the dog, of course) if he needed residential care. I think, deep down, even dad feels that sense of floundering.

It is so, so, sad. I think I am writing this just to clear the whole, unhappy, situation out of my head. We have tried to gently help dad understand that, what with the ‘lump in his bladder’ (the ‘C’ word is another letter-word that he cannot remember or accept applies to him) and the advancing nature of ‘confused-dot-com’, he maybe needs more care that we can arrange at home.

The tracks are coming to an end, and we would like to bring that train into the station safely if it is at all possible…