Living with dementia in a rural community

September 2017 saw the launch of the Dementia Action Alliance’s (DAA) ‘From Seldom Heard to Seen and Heard’ Campaign. The campaign focuses on people living with dementia and their families from six communities who are often marginalised from services and support: Lesbian, Gay, Bisexual and Transgender + (LGBT), Black, Asian and Minority Ethnic (BAME), Young onset dementia, The prison population, People living in rural communities and People with learning disabilities.

I’m a national member of the DAA, and proud to have worked with the team in developing this campaign, mostly by utilizing my extensive knowledge and experience of working with people who have a learning disability and dementia. I wrote about BAME communities in my October 2017 blog, and for this post, I want to think about the challenges for people with dementia who are living in rural communities.

It’s a topic close to my heart - I’ve always lived in rural areas, and currently live over 11 miles from my nearest town. My dad was a farmer with a passion for the countryside, and he fostered my love of rural life, nature and the environment from an early age.

But whilst I love rural living, I’m also well aware that it isn’t without its challenges. Although rural communities can often be amazing at pulling together and looking after their own, there is no doubt that many people can also be very isolated and lonely if they become ‘cut off’ or reclusive.

For a person developing dementia, particularly if they live alone, that can lead to numerous problems. My dad went ten years without a diagnosis, and whilst I would be the first to admit that there were many factors that contributed to that timescale, I do wonder if living miles from healthcare services made him someone who was ‘out of sight and out of mind’.

Dad’s local town was 9 miles away, and although he was on a bus route the services weren’t as frequent as in urban areas. During his 10 years without a diagnosis dad stopped driving which made him even more dependent, not only on public transport but on his family too. I didn’t learn to drive until after dad’s diagnosis, by which time he was living in a care home, so it wasn’t like I was much use on the transport front either.

Had dad received a timely diagnosis, and had services existed back then that he or I had wanted to access (groups and therapies for dad, or for me, carers services), our involvement would have been dependent upon us having suitable transport that got us to these services at the right time. For many people living in rural communities, these are sometimes problems that prove insurmountable.

Reflecting now, I also see how lucky we were that dad didn’t get into serious difficulties living surrounded by fields (the garden backed onto open farmland), ditches and streams whilst he was developing dementia. The countryside was very picturesque, but had dad decided to go out walking and then become unable to find his way home, it’s quite possible no one would have seen him, let alone found him, potentially until it was too late.

Urban areas tend to have more landmarks, in terms of buildings and points of interest. There are also many more CCTV cameras and members of the public who might see someone with dementia who has got lost whilst walking. Finding a person with dementia who is confused and disorientated in that environment is possibly easier than in the countryside.

My dad was living on the edge of a small village, so we weren’t completely cut off from civilisation, but many people living in rural areas may be far more isolated down a dirt track without another house in sight. If bad weather then hits the potential for difficulties or disasters becomes considerably greater.

Of course it isn’t just about hazards and problems. Many people living in rural areas benefit from cleaner air, more open spaces and opportunities to absorb themselves in outdoor pursuits that improve their wellbeing. Even being able to sit by a window and look out onto open fields and watch the animals and birds, enjoying how the changing seasons alter the natural landscape, is something many people in urban areas may crave.

Isolation and loneliness isn’t just reserved for individuals living in the countryside either. It’s often said that you can be surrounded by people in a town or city and yet still be the loneliest person in the world. Just because you have countless neighbours all around you, doesn’t mean anyone will actually knock on your door.

But I do firmly believe that people living with dementia in rural locations face some specific challenges, particularly around accessing services and support and remaining safe and well (although not resorting to being risk adverse), that require all of us to consider how we are reaching out to these individuals and communities and making our services and support accessible. Yes, some dementia friendly community work has happened in rural areas, but certainly not in all of them, or even the majority.

Where I live is currently undertaking a neighbourhood development plan survey, and one of the areas I’ve highlighted in the lack of retirement and extra care housing, and residential care services, for our ageing population. People who live in rural areas have every right to reside in the location of their choosing - they shouldn’t be forced to move to an urban area if they don’t want to just because their needs are changing and there is a lack of services and support in their locality.

Of course there are always challenges to find staff, and run health, social care and third sector services in rural areas that are sufficiently used that they remain viable, but as a country we need to become much more innovative about supporting people in every community, regardless of how rural they are, to lead the life they want, including when they are living with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886
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Co-production in health and social care - It really isn't rocket science

Last week was the first ever National Co-production Week, identified on twitter as #CoProWeek. Organised by the Social Care Institute for Excellence, the creation of this awareness raising week marks an important milestone in recognising that if you work in health or social care, it's actually a pretty good idea to listen to, involve and continually work with the people who are using your service(s).

Purely co-incidentally, the start of National Co-production Week also saw the launch of a report I was involved in creating with Carers Trust that looked at the 'Care Act for Carers: One Year On' (PDF). Amongst our recommendations was an explicit remit (on page 23) tasked to one of the pioneer co-production organisations, Think Local Act Personal, to involve carers (people who care, unpaid, for a friend or family member) in services:

"Think Local Act Personal should work with carers to devise and offer training and materials to support practitioners to work with carers to co-design personalised support."

We also reiterate the importance of ‘co-design’ in our 2018 ‘wish list’ (on page 25):

"Social workers and other care practitioners can show that tailored support plans are routinely co-designed and kept under review with carers."

The history of co-production

'Co-design', or 'co-production' may sound like modern day jargon (they are unpopular descriptions with many people I know), but various incarnations of the basic principles of involving people who use services, and their carers and families, in how services are designed, created and run have been around for many years.

If anything, that is my personal disappointment. Through my work I’ve met stalwarts of the 'co-production scene' who have been co-producing for an incredibly long time and yet they feel little has changed on the frontline. In my view, that lack of change isn't a reflection upon those individuals at all, but more about how our health and social care systems respond to those people and the need to challenge the status quo.

Historically, we’ve been far too keen on ‘doing things to people’ rather than truly involving people in their own care and support. We like to tell our fellow citizens how things will work and what will happen to them, being prescriptive and precise, and expecting them just to go along with it. Their own opinions have been seen as irrelevant, perhaps even dangerous, and of course 'professionals know best' anyway. In other words, citizens (patients, service users, carers and whatever other labels you want to affix to ‘Joe Blogs’) should be ‘seen and not heard’.

In June 2012, I wrote a blog entitled ‘How do you make good dementia policy?’. Much of what I talk about in that blog is about co-production, except I didn’t call it co-production then. To me it was just the simple principle of involving people, which I summed up in this quote:

"My view is that you need those with direct past and present knowledge and experience of dementia to be at the forefront of policy making, privately and publically."

Tokenistic involvement isn’t enough

I have a fundamental belief that within health and social care, there is still an arrogance amongst many leaders to even involve citizens in their work, never mind truly embracing co-production and embedding it within their organisations. Often involvement is tokenistic, piecemeal and descends into glorified talking shops, which are then evaluated poorly and deemed pointless.

Budgets to support true co-production rarely exist, or are extremely limited. Interestingly, these funding arrangements are always decided by people employed by organisations, and I do wonder if being in the safely of a salaried job stifles the desire to engage and create beyond your own job description.

That may sound harsh, but given that in 2012 I was writing about the need to involve people who use services and carers in those services, I simply haven't seen enough innovation to justify a more positive assessment. If we could get to a stage whereby the viability of health and social care services was judged by how well they engaged with the people using their services, and their carers and families, I suspect a rapid improvement would soon follow.

Current, classic examples of organisations not engaging are seen on the conference scene, where too often I still see programmes for events that don't include the voices of experience. From the knowledge I have through my work, I don't believe that enough local authorities co-produce their services with their citizens, nor do NHS trusts or social care providers, and likewise for national government.

And yet, in that 2012 blog post I made the value of lived experience crystal clear when I said:

"The greatest educators are people who have learnt from their own experiences."

Time to change

I am impatient for change, I would freely admit that, and those who are embracing the true principles of co-production don't get enough praise for their work. For everyone else, I come back to this quote from that 2012 blog post:

"If you want to know about frontline warfare, you ask a soldier. If you want to know about famine in Africa, you go to Africa and ask the people who are starving. If you want to know about dementia, ask the people living with it and carers past and present who have dedicated their lives to understanding dementia."

For dementia, read any condition, any service, any experience. There are always citizens to ask about their health and care, always something to learn from listening to them, and always a way of meaningfully and fully engaging them in how you serve them now and in the future. It really isn't rocket science.

Until next time...

You can follow me on Twitter: @bethyb1886

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Living with dementia as a younger person

In amongst the figures announced recently by the Alzheimer's Society on the scale and cost of dementia in the UK, the data on the numbers of younger people developing dementia was particularly notable. It is estimated that 42,325 people are now living with younger-onset (early-onset) dementia, a number considerably higher than previously thought. Given the problems younger people often have around obtaining a diagnosis it is probably safe to say that the actual figure could be even higher.

Dementia is traditionally associated with older people. That is the prevailing view amongst the general population, and in truth little has been done to dispel it. Occasionally there will be a newspaper or magazine article about an adult under 65 with dementia, and rarer still a child with dementia, but such coverage is often more sensationalist than really educational.

We know that dementia remains stigmatised generally, but if you are a younger person with dementia that stigma is likely to be far more significant. We know too that there aren't enough good quality, personalised and responsive post-diagnostic support services for people who are diagnosed with dementia - again, if you are a younger person that dearth of support is potentially even greater. 

It is well documented that carers of loved ones with dementia generally don't have anywhere near enough support to carry out their caring role. However, that situation can even more acute if your loved one is younger and your family is plunged into a completely different type of crisis around jobs, housing and the care of under-age children. It is also worth noting that dementia in younger people often progresses quicker than for older people. That isn't always the case, and many younger people live well with dementia for many years, but such wellbeing is usually in spite of rather than because of the level of support and care that they are offered from their local health and social care systems.

Issues around the progression of dementia are challenging enough, but adding in the potential requirement for residential care makes the picture even more complex. Many families find it difficult, if not impossible, to source a high quality care home that specialises in caring for younger people who are living with dementia. Mostly the only option is aged care, where a person in their 50's could be living with people in their 80's and 90's with very little in common in terms of hobbies and outlook.

Combine the factors of increased stigma, inadequate post-diagnostic support, challenges for family carers, likely progression of younger-onset dementia, and the lack of specialist residential care together and there is absolutely no doubt that if you are a younger person who is living with dementia you are facing numerous obstacles to living well. Even many of the therapeutic products that have been developed to help individuals who are living with dementia are based on reminiscence of eras that will mean little to younger people.

There are numerous societal pressures too. Because most individuals don't understand that younger people can develop dementia, if you are a younger person with dementia you face being disbelieved when you disclose your diagnosis. You may well become more isolated because friends of the same age cannot comprehend your diagnosis, and if you are working and find that your employment ends you can face huge financial pressures around paying your mortgage etc.

Your local services, if you have any, are generally aimed at older people (be they day centres, singing groups or dementia cafes), although there are some notable exceptions which I will cover at the end of this blog. Vital connections into peer support and international mentoring are often not made at the point of diagnosis, and so isolation is further compounded, added to by difficulties in travelling if your driving licence is taken away.

To say that the UK is badly failing younger people with dementia is something of an understatement. Why this group of people have been ignored for so long is, I suspect, due to that prevailing societal view that dementia only affects older people. If that is the case, then these latest figures should be a big wake-up call to our politicians and policy makers. Whilst specialist services may not be cheap, the cost of providing nothing is far greater, both for the health service and for every single family affected by younger-onset dementia.

Whilst the powers that be mull over that prospect, I couldn’t write a blog post about younger-onset dementia without mentioning some of the inspirational individuals and organisations who are leading the way for younger people with dementia. In their own way each challenges the stigma and discrimination faced by younger people with dementia, and together they form a powerful, collective voice. I hope that through them not only will society learn more about living with dementia generally, but that the particular needs of younger people living with dementia become better understood and more comprehensively addressed.

For anyone who is UK-based, there are a huge amount of resources on the Young Dementia UK website, including a regional breakdown of specialist support services for younger people who are living with dementia: http://www.youngdementiauk.org/support-across-uk. Young Dementia UK also have a list of blogs written by people who are living with younger-onset dementia, including Kate Swaffer and Chris Roberts, two very active campaigners for the rights of younger people who are living with dementia: http://www.youngdementiauk.org/blogs.

Although not exclusively working in the field of younger-onset dementia, I would also recommend checking out Dementia Alliance International, and the work of Norman McNamara, Innovations in Dementia and Dementia Mentors.

Until next time...

You can follow me on Twitter: @bethyb1886

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Special Measures – My view

Last week's announcement that adult social care providers who deliver sub-standard care face being put into Special Measures from April 2015 proved to be quite a momentous event for me. I was involved in the announcement (details here), and it understandably produced a lot of mixed reaction.

I'd like to use this blog post to clarify some of my thoughts around this issue in more detail. The singularly most important thing to stress in this debate is that the majority of care is good care. I have written extensively about the amazing care my father received from many dedicated and caring professionals (for examples see: 'Continuity is key', 'Sense and simplicity', 'End-of-life care - A very personal story') some of whom are still good friends of my family. The coverage I have given to the positive aspects of my father's care on D4Dementia and elsewhere far outweighs coverage of our negative experiences.

It is widely known that adult social care has a poor reputation, badly tainted by the actions and culture of a minority whose conduct hits the headlines in a way that the many positive stories of wonderful care never do. Yet, as I said in my statement in the press briefing for the Special Measures announcement, "Most care is excellent. Most care workers are dedicated, and often undervalued, professionals". 

I am the first to acknowledge that there are huge issues in the recruitment and retention of good care workers (see this blog post), and that the terms and conditions that many work under fall well short of the professional standing and associated remuneration that I would like to see given to care work. But none of this is an excuse for poor care. Many good care workers have terms and conditions of employment that do not fairly reflect the work that they do and yet they still deliver great care, and of course the many volunteers who help to prop up services earn nothing at all and often make an amazing contribution to the lives of vulnerable adults. 

None of that in any way belittles the issues around employment of care workers, but aligning debates about employment with debates around poor care almost gives the impression that unfair employment conditions are an excuse for poor care, when there can never be an excuse for poor care. I know for a fact that the many wonderful people who cared for my dad weren't paid enough, or valued by their employers as they should have been (one of my dad's care homes had 4 different owners in the time he lived there), but they were fundamentally dedicated and caring people who did amazing work in often very difficult circumstances.  

In terms of the proposals about Special Measures, many people have asked me what will be the difference between Special Measures and the powers CQC have now to issue warning notices and if necessary take action to remove the registration of a provider and close a service. To clarify, CQC have been asked to develop a Special Measures regime for adult social care by the Secretary of State. That process will begin in autumn 2014 and be done via the Adult Social Care Co-Production group that I am a member of. At present, the in depth details of what Special Measures in adult social care will look like are still to be decided on.

In the meantime, I have my own personal 'wish list' that draws on the experience of poor care that we had in the last 6 months of my dad's life. This list includes:

1) Timely intervention - Often vulnerable people don't have weeks and months to wait for improvements to happen. If the 'care' they are receiving is acutely failing, it could cause serious injury or premature death.

2) Targeted intervention - A Special Measures style intervention should, in my view, directly address particular concerns by signposting to resources that can make an immediate difference to the lives of the people receiving a care service. There are loads of great resources available, and accessing them doesn’t necessarily require a provider to spend a lot of money. We are very fortunate in the UK to have The Social Care Institute for Excellence and Skills for Care alongside many other innovative and highly effective national and local organisations, businesses, charities and community interest companies that can provide guidance, practical resources and be catalysts for change. Indeed, independent of regulation some care providers work with me in a consultancy capacity to evaluate, improve or change aspects of their service, so there are many proactive and forward-thinking providers out there already.

3) Sensitive intervention - It is vital to be mindful that a care home is the home of the people that live there. In my view Special Measures must do everything possible to turn a service around in a timely and targeted way without the people that live there having to find a new care home, unless of course those people want to find new care home. Having to move can be very distressing, and again possibly hasten a person's death is they are particularly frail or have advanced dementia.

4) Public accountability - I hope that, like with hospitals, Special Measures will provide clarity for families about the status of a service. Families aren't stupid - they know when care isn't good enough, but generally they are often too afraid to speak up. They need to see CQC taking firm but fair action that addresses shortcomings if a service isn’t safe, caring, effective, responsive and well-led. As part of that process, I would like to see all providers actively working with families in a renewed effort towards teamwork and inclusivity in the day-to-day life of a care home.

So how are care providers likely to react? In my view, if you are a good care provider you have nothing to fear. If you are a provider who is found to have a service that is delivering sub-standard care but you are prepared to work hard on turning that service around you have nothing to fear. If, however, you are a provider of a sub-standard care service and you are complacent and disinterested in improvement then you are a danger to the people who rely on you (people receiving your care, their families and any good care workers that you employ), and anyone who may come into contact with your service in the future. It is then the role of CQC to take action and it would be indefensible if they didn't.

There is some disquiet that putting a service into Special Measures will mean that the provider cannot maintain their revenue stream if one of the conditions of Special Measures is to prevent the provider from having new admissions to their care home or new clients to their homecare service. This, however, isn't new - there was a period when one of my dad's care homes was closed to new admissions due to safeguarding. In my view this actually helps providers; it enables them to focus on their service and the improvements that are needed without the added responsibility of caring for more people, and it safeguards the public from anyone else coming to harm whilst the service implements improvements.

Is privatising care the reason poor care exists? In my view poor care can occur whether the provider is making a profit, is a not-for-profit or indeed is a public sector organisation. The causes of poor care practices are, more often than not, centred around the culture of an organisation, its leadership and in some cases individual staff teams or members. Can hospital-style Special Measures work in social care? No, because clearly there are significant differences between hospitals and social care, but there are certainly some positive examples of hospitals turning themselves around as a result of being placed into Special Measures.

Can CQC be trusted with this? As is well known, CQC didn't provide us as a family with the support we needed when my father was alive, but arguing about the regulator isn't going to change the fact that they are still the regulator. Working with them to improve social care, celebrating the outstanding examples of care and uncovering inadequate care is the only option in terms of the regulation of UK health and social care services. As I have said in the past, inspection - however rigorous and informed with intelligent monitoring - will still only be a snapshot of a service. Whistleblowing is as vital now as it has ever been, whether you are a person receiving care, a family member or a social care worker.

I believe as a country we owe it to every person who needs social care and their family to ensure that care is the very best it can be. I will always champion that regardless of who is in government and who the regulator is. I feel passionately that we must be the change we want to see, and constantly strive for improvement and the eradication of poor practice.

Until next time...

You can follow me on Twitter: @bethyb1886

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A rallying call!

For the start of 2013 I wrote 'My dementia wish list’. Arguably I could just re-blog that for the start of 2014, since everything I described in that post is just as relevant now as it was 12 months ago.

Does that mean 2013 was a failure in terms of achieving those aims? Some may argue yes, but I’m not naïve enough to believe that those 10 objectives can be met in just one year. In my mind they remain a benchmark against which we should all be judged, and I include myself in that.

So many people talk about the end of the Christmas holidays conveniently forgetting that for many people the last two weeks haven’t been a holiday. For family carers and many front-line health and social care staff, Christmas Day, New Year’s Day and the other 363 days of the year are interchangeable; the relentlessness of what these individuals do, combined with their dedication and selflessness is what keeps our most vulnerable people safe, well and happy. If we recognise nothing else in 2014 it should be that.

Sadly with existing budget cuts, and more in the pipeline for 2014, services are closing or being restructured in a way that often appears to bear little resemblance to what might benefit family carers and frontline staff. Granted I’m biased after my experiences with my father, but I do genuinely believe that there are some things a civilised society should hold sacred, and looking after its most vulnerable people, and those who are charged with caring for them, to the best of that society’s ability should be sacrosanct.

Of course if evolution makes it possible to do things better and spend less money in the process that is a win-win for all, but the shear logistical requirements of health and social care will always have a high price tag, and to only see that rather than the requirements of the people accessing desperately needed support is the mind-set of someone who has never needed help for themselves or a loved one.

That mind-set is also completely at odds with the experiences many readers of this blog have had. A glance at the top 5 most-read posts on D4Dementia offers a very interesting insight into the priorities my readers have:

5) End-of-life care: A very personal story

4) Hydrated and happy (Dehydration)

3) So how much do you know about dementia? (Awareness)

2) The voices of experience (Experts by experience)

1) Hard to swallow (Swallowing problems/dysphagia)

The social media activity around my blog has shown, time and time again, that the posts involving practical advice on how to cope with common experiences of caring for a person with dementia (as delivered by ‘Hard to swallow’ and ‘Hydrated and happy’) are as widely read by professionals as they are family carers - indeed perhaps even MORE widely read by professionals.

Likewise the need to understand what good end-of-life care looks like will affect us all at some point, and as much as it is a difficult and potentially even a taboo topic, people from all walks of life are driven to seek out that advice. Then, of course, there are posts 2 and 3 on my list that exist to remind everyone about the value of the lived experience, and the need for basic awareness delivered in a meaningful way from said experts by experience.

The popularity of these five posts alone, alongside a look at the search terms statistics that tell me what individuals are searching for when they find D4Dementia, proves just how much this information is needed and how interchangeable it is (IE: not confided solely to those who are caring for a person with dementia). It doesn’t take much more of a leap of faith to link that need for information with the real-world need for care and support.

Fast forward another 12 months and I suspect that at the start of 2015 this may have become an even more desperate situation for many people. What of course will be looming on the horizon by then will be the UK General Election, expected in May 2015. In order to ensure that the needs of the UK's most vulnerable people, and those who care for them be they family members or professionals, are not forgotten, 2014 will be a pivotal year to continue to highlight the difficulties that they are facing and push for the care, help and support that they need.

If I could give you a rallying call for 2014 it would probably read ‘Let’s be united and determined’. In my mind there is no greater challenge for the year ahead than to ensure that health and social care is given the priority anyone who has needed it, or worked in it, knows it deserves.

Until next time...

You can follow me on Twitter: @bethyb1886

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What makes a dementia friendly community?

When I last wrote about the UK’s dementia challenge I said that we needed to make our country a place where people who are living with dementia can lead the lives they deserve to, rather than the ones foisted upon them by prejudice and ignorance. In practice, this means every community becoming dementia friendly, embracing this most cruel of diseases, and seeing the people who have developed it as an asset, rather than a problem.

It requires a change in attitudes, approaches and opinions that will not happen overnight, and realistically some people will never be convinced by the argument that everyone with dementia deserves to live well with it, rather than simply die from it. However, given the current numbers of people with dementia, and the predicted number of cases for the future, many more lives are going to be touched by this disease than a lot of people may even want to contemplate at the moment, making this the time for the UK to become both more aware of dementia and more friendly towards it.

At every stage of dementia, from pre-diagnosis to end-of-life care, every service accessed by people with dementia and their carers needs to have an intrinsic appreciation of what dementia means, how it affects everyday life, and what can be done practically to make using services easier. For the wider community, it is about adopting the key principles of compassion, dedication and personalisation to ultimately become more dementia friendly.

None of this is achievable without widespread awareness and education of dementia across all generations, from education in schools to campaigns targeting people in their 20’s, 30’s and 40’s whose parents or grandparents may be showing signs of dementia, and finally to supporting people in their 50’s, 60’s, 70’s and 80’s who may have dementia themselves, be trying to look after a partner with dementia, or are concerned about the impact dementia could have on their life if they develop it.

To do this community healthcare services, community groups, social and charitable groups, local and national media, and technology like social media, apps etc need to pull together as one to reach as wide and diverse an audience as possible. Realistic but also positive coverage of dementia that informs people, rather than terrifying them, will prove that this disease is not a black hole of nothing, and that living well with it is an attainable desire for everyone with dementia and their families and friends.

At the heart of all awareness campaigning must be people with first-hand experience of dementia, whether they are currently living with it, caring for someone with it, or have done in the past. I have written previously about harnessing the power of people’s first-hand dementia experiences to appeal to the hearts and minds of the wider population, and that will never be more important than in the quest to make dementia friendly communities. These people are the pioneers who can lead the way in helping the whole country feel as passionately about dementia care as they do. Small seeds of change do already exist within social media, with the Twitter hashtag #dementiachallengers uniting people, like me, in this common goal.

As I have often touched on, whilst I wish my father had never had dementia, his years with it gave us as a family many memories and experiences that changed our lives in a positive way, finding hidden depths to our feelings and resources, and giving us the privilege of supporting a wonderful man in his life with dementia that, whilst he would have hated it, also gave him the opportunity to show great courage, dignity, good humour and warmth in living with it.

Although much has changed since my dad’s life with dementia began, there are still significant barriers for people living with dementia today. Access to services is still very much a postcode lottery, people are often not informed or supported regarding what they are entitled to, there is not enough emphasis on providing therapeutic dementia care (through the arts for example), not enough access to some of the great design and technological advances that can improve the lives of people with dementia and those who look after them, and there are many day-to-day obstacles to overcome. Even a simple trip to the shops, or going out for a coffee, can turn into people staring at you, whispering, being unhelpful, or refusing to make allowances for the needs of someone with dementia, and that is assuming you have the resources to even get out of the house or care home to begin with.

So much can be done to remedy this, however. Organisations can train staff to become dementia aware, not just to assist customers but also as part of the pastoral role good employers should adopt in supporting their staff in their personal lives, recognising that many of their employees will have family, friends or neighbours with dementia who rely on their help. Improving customer advice and liaison roles to encompass helping people with dementia who may be disorientated, confused, aggressive or upset, simplifying signage to help people with dementia to find their way, supporting people with financial transactions, adapting menus to reflect the needs of people who require soft or purred food because of a swallowing problem, and providing toilet facilities that help carers to change incontinence pads in privacy, are just a few simple but important issues businesses can address to become more welcoming for, and understanding towards, people with dementia.

It is not just down to businesses and service providers to make our communities dementia friendly though. If everyone understood dementia, recognised the symptoms in family members, friends and neighbours, and provided a supportive environment where we look out for each other, help with simple tasks, are able and willing to call for professional help when it is needed (and for that help to be forthcoming and appropriate), and took the time to offer kindness, a listening ear, a compassionate touch and a caring outlook, then all vulnerable people, not just those with dementia, would be able to live far more fulfilling lives that offer quality and richness.

Ultimately dementia friendly communities will only exist if there is a shared will between the people, policy makers, media and businesses to make this happen. Creating communities where people with dementia are welcomed, supported and enabled to get the maximum out of life will require flexibility, forward-thinking, huge commitment and above all instilling within our society how valuable people with dementia are.

Recognising the contribution people have made in their lives prior to having dementia, celebrating that, tapping into it and helping them to be as active, healthy and happy as possible during their life with dementia will need the rest of us to show the same courage and determination that my dad, so many before him and so many right now, are showing in battling their own personal dementia challenge.

Until next time...

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