Time to Relax for Unpaid Carers – part two

Following on from Linda’s blog about the first day of their recent “Time to Relax” leisure break, I’m delighted to share the second half of Linda’s story with you.

So Linda, it’s over to you to take us through day two..

Linda Barnes – Wife to Carer

I’m getting some breakfast juice. I return to the table to find Ken trying to eat the cornflakes I’d left in front of him with a knife and fork.

No one else around the table bats an eyelid. There is no embarrassment. It is simply a demonstration of where Ken is in his dementia journey. I gently swap the cutlery for a spoon, and am given a smile by a fellow carer, no words are needed.

Ken woke this morning in a four poster bed of giant proportions. In fact the room and everything in it makes me feel small. It’s impressive and fabulous but not perhaps dementia friendly, it is designed for a far grander purpose.

There’s a huge gilt freestanding mirror. Perfect for a bride to admire her trousseau, but to Ken it has a menacing edge. He catches a glimpse and thinks there is some else in the room. I demonstrate my comedic skills and dance in front of the reflection, a reassurance there is no one but us.

The bath is an incredible feature, the stuff of posh magazines and footballer’s houses. I joke even if we could get in, we’d never get out. But it is the shower screen that is our biggest obstacle, a plain sheet of glass, very discreet and modern, but Ken can’t judge where it is and is frightened by it.

Dementia brains are different, spatial awareness can be compromised. What is obvious to us isn’t to Ken. It is the only negative I can suggest in our whole two days. I think perhaps the bridal suite would be better suited to a higher functioning couple than we are.

It’s raining, so plan B is put into operation. The boys go tenpin bowling. I’ve a little apprehension re the bowling shoes, but Covid measures mean changing footwear isn’t required. The boys have a fantastic morning.

Meanwhile we ladies take on the tasks of self care and preservation. We have a ‘wellness session’ which reveals deeply hidden emotion. I have a neck and shoulder massage. It is a mixture of pleasure and pain, as my lovely therapist tries to undo the knots in my muscles. I feel inches taller when it’s over.

We paint pictures with non dominant hands and are encouraged to make mess, it’s all about finding the child within us.

More food, delicious soup and sandwiches. Then more cake.

Our afternoon session is a lesson in meditation, all about the breath, all too soon it’s time to go.

The lads are having a sports quiz, prizes are awarded for the bowling, everyone is smiling, that positive buzz hasn’t faded.

A closure speech.

There’s thank you’s all round.

I don’t think the organisers can truly appreciate what they have given their guests.

We have felt nurtured, respected, understood.

Everyone has benefited from the experience and will hopefully carry its effect with them when returning to the everyday.

A social entrepreneurial experiment that has been a massive success. We have shown people living with dementia can still have a fantastic time if the venue and people are sensitive to needs.

It reflects on society as a whole, if more people understand dementia then we are all the richer. The support staff undoubtedly had as good time as we did. It just takes understanding, and a bit of a gamble, I’m so glad they took a chance on us .

For the first time for a very long time we felt like any ‘normal’ couple.

I wish the project every success, and hope it will go from strength to strength so that more couples get the chance to experience the positivity

An opportunity to make a difference?

This certainly was.

Thank you so much.

Wow, what can I say. Linda’s insight, as well as the feedback from her fellow wives and carers is priceless to me. Without it, how on earth could we design services that create opportunities to be “normal”.

Here’s the link to Linda’s blog page


Time to Relax for Unpaid Carers

We’re always seeking new ways to help the families we support enjoy a happier, healthier life. This week we tested out a two-day leisure break with eight families, all living with a diagnosis of dementia or Parkinson’s disease. I’m sure you can imagine the potential challenges and risks we faced. However, we were determined to create an event that gave carers Time to Relax and their partners the opportunity to enjoy their favourite sports.

Rather than tell you how things went on day one, I’m going to leave it to Linda and her thoughts as a wife and carer. Over to you Linda.

Alfreton Hall

Gosh what a day!

My concerns re motorway driving don’t come into fruition and I arrive at our venue right on time.

There are high ceilings in this grandiose reception room and three distinct groups, we sit with our fellow Yorkshire contingents.

Our host is smiling broadly and welcomes everyone with the same friendly charm, it is obvious the delight that his dream of a dementia friendly break for Carers and their charges has finally become a reality.

I can only imagine the work behind the scenes, our invitation to join was readily accepted. It’s an opportunity for a night away with Ken in a controlled and caring environment that doesn’t come very often, in fact has never happened before.

It’s clear from the start that this is a bit of an experiment, no one really knows how it will go, but the positive vibe is palpable, everyone here wants to make it work.

I suppose we are guinea pigs, invited to test out the facilities and itinerary, we are to be asked to give our honest and critical feedback as well as positives and highlights at the end of our two day experience.

Ken’s golfing group is at our nucleus, and the two similar groups running in Lincoln and Nottinghamshire have united for this special introductory event. It is in in collaboration with Alfreton Hall, the venue for this brave initiative.

On this occasion the Carer’s are all ladies, their Cared -for all men. Ken recognises some faces and is very quickly at his ease.

We have and introductory chat then are divided, two different itineraries, carefully considered. The men go in a mini bus to the local golf course, they are in experienced and familiar hands. There is no hesitation from Ken, being with the lads is what he enjoys most.

We Ladies are left to chat. We all explain a little about our lives. Many of the threads are similar and we bond easily. It is a strange phenomenon but true, that although we have only just met we share a common story and the understanding is both empathic and mutual.

Time flies. By the time we have a lunch it feels we can talk honestly and openly about issues only we with experience can possibly relate to, it is a cathartic and healing environment. It feels like a big safety blanket has swept us all up.

All of us feel the weight of responsibility lifting from our shoulders. We’re not clock watching, we have trusted our ‘others’ into capable hands. Words like ‘freedom and time’ feature in the vocabulary.

Just being ‘like ladies who lunch’ for once, eating delicious sandwiches and glorious cake, feeling special and blessed.

It feels a bit serial, seated in the white room, decorated with its ornate plasterwork and gilt. A beautiful place usually exclusively used for marriage ceremonies, and rather grander affairs than our own. But we welcomed, our gentle and kind facilitator listens, the surroundings feel like a lovely dream where dementia doesn’t exist. It’s a huge treat for all of us.

After lunch we have a ‘sit down yoga’ session over zoom. The teacher is experienced and I feel my self drifting to the rhythm of my breath. It’s also more strenuous than I expected. I know well the importance of body and mind in fusion, so why is it then I don’t always care for myself as well as I should?

I resolve to make a more concerted effort in future. Even I can forfeit ten minutes a day to my well being.

The ladies take a stroll around the adjacent parkland, with no one in charge we go slightly off track. We arrive back at the hall slightly late to find the men happy to see us after their busy day of walking and golf.

By now the segregation groups of the morning have merged into a harmonious society of friends, Ken can’t recall what he has done but is smiling broadly. ‘It’s been a good laugh’ he can tell me and that’s really all that matters.

The biggest shock of the day and one which causes much hilarity is that Ken and I have been allocated ‘The Bridal Suite’ the largest and grandest of the eight bedrooms. It is huge with four poster bed, enormous mirrors and a large chandelier. The bathroom has a freestanding bath and dual shower. It is literally like the ‘throne’ room with two crystal appendages hanging from its high ceiling with deep carved cornice. We have views of the gardens and fountains To say it is palatial is an understatement. I’m smiling as I write. Ken is dressed and gently snoring beside me laid on top of the bed, probably not most the romantic!

Dinner tonight is a combined affair. The dining room is beautiful I’ve even chance to wear a dress and some heels.

There is an entertaining pre dinner talk about a life in football by an ex professional and his association with Brian Clough. Just at the right pitch, it sets the tone for the rest of the evening.

We are called for dinner and the three course meal is served around large round tables of grand proportions. This is after all a wedding and conference venue. I imagine sadly Covid will have had a serious consequence to it’s business over the last eighteen months.

Everyone has made the same sort of effort the ladies look lovely and it’s rather nice to see the men out of golfing gear. It feels like a proper night out.

The food is fabulous and the quantity and quality has all the guests approval. The service and situation reminds me of dinner on a cruise ship where strangers share experiences and become holiday friends.

Certainly our table is full of chat, the conversation light and companionable. I learn things, Ken contributes where he can, and tonight he exceeds my expectations managing his food, I discreetly assist where necessary, but it really doesn’t matter this is a safe place.

It feels incredibly normal, Dementia has been banished to the background. Talk isn’t about what we can’t do it’s about being proud of the things we have been lucky enough to do. There is a relaxed and positive mood about this dinner, and a genuine understanding.

I approached this night away with some in trepidation that was totally unfounded we have all been supported beyond my expectations.

Everyone retires early, Ken is immediately asleep. I lie in the four poster princess bed and reflect on the day.

It seems to me that being apart for a change doing different things has brought Ken and I closer together. He particularly has loved being ‘one of the boy’s’ saturated in male humour and camaraderie. I have loved all the ‘girl stuff’ but most of all fluent conversations.

If today is a blueprint for the future then I find it hard to find fault.

Best still we still have another day!

10/10 so far.

Linda’s review of day two will follow shortly !

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Golf is More Than A Game

How two local football legends’ lives are transformed by golf in their battle with dementia

I’m incredibly proud to share this story with you. In recent weeks, the link between dementia and football has, quite rightly, been in the spotlight. Our governing bodies need to do more to support footballers with dementia. Whilst we cannot offer a cure for this terrible disease, we prove how sport, especially golf, can play a part in creating better outcomes when dementia tries to put an end to a sporting life. The determination to provide more families with the chance to keep that sporting spark in their life burns brighter than ever today. I hope you enjoy the story and help us raise awareness about our pioneering work.

More Than A Game is the incredible short film on how golf is helping transform the lives of two ex-professional footballers living with dementia.

Club record goal scorer, Jim Hague, and towering centre back, Fergus Donaldson are now in their 60s and 70s, but need no introduction to any seasoned Harrogate Town FC fan.

Their heart-warming story brings attention to the link between dementia and football that affects not just world winning heroes like Bobby and Jack Charlton, but also potentially thousands of ex-professionals from that era and how golf can be a solution to the growing dementia crisis.

More Than a Game

Landmark research

A 2019 landmark research project reported that former professional footballers are three and a half times more likely to suffer from dementia, and other serious neurological disease, confirming a long-suspected link between the sport and brain damage. The 22-month research project by the University of Glasgow’s Brain Injury Group also discovered there was a five-fold increase in the risk of Alzheimer’s, a four-fold increase in motor neurone disease, and a two-fold increase in Parkinson’s.

Transforming lives through golf

Golf In Society founder Anthony Blackburn, is on a mission to help transform the lives of an ageing population by introducing them to the health and wellbeing benefits of golf. Anthony and his team have delivered over 600 sessions across the UK supporting families facing challenges in later life including dementia, Parkinson’s, stroke and loneliness.

Jim and Ferg are just two of hundreds of people living with chronic illnesses whose lives have been transformed by Anthony’s Golf In Society sessions which gives them the opportunity to keep that “sporting spark” in their lives.

Anthony says: “It’s interesting that most of the people we support have enjoyed sport throughout their lives, however not always golf. What we do is extend people’s enjoyment of life and show them how golf can be their new sporting fix”.

Raising awareness of the global problem

Teaming up with Albatross Media, they have created a short documentary called ‘More Than A Game’ to showcase the incredible results Golf In Society is achieving at their various golf venues across the country.

“I hope the story of Jim and Ferg acts as a call to action to our health & social care stakeholders, political leaders, the golf industry and society as a whole as to how golf can play a leading role in improving the lives of our ageing nation.

“With the right support, our mission can be fast-tracked and the outcome will be more families benefiting from services like Golf In Society sooner than we imagined.

“If we’re serious as a nation about improving the health & wellbeing of families living with dementia, then services like ours, designed with our customers at the heart of them have got to be more widely adopted”

But the question I really wants to know the answer to is, after watching the film do you think that golf sessions like this should be made available to support more families living with dementia in the UK?

Anthony Blackburn – Founder

Can a common goal be the catalyst to new relationships?

Guest Blog – Written by Aidan Carswell

I believe it is.

So where did It all start?

My journey started when I was 11, both of my parents worked full time and as a result I spent a lot of my time after school around at friends houses or childminders, I loved it.

It opened my eyes up to activities and opportunities that I would never have thought of pursuing. One of these happened to be the wonderful world of golf!

One warm summer day after school, my friend’s mum took me to Ripon city golf club’s Driving range while her child had a lesson at the tennis centre. That was it. I was hooked or as some may say “he’s got the bug”.

I would beg to be dropped off at the golf club throughout the summer holidays where I would practise and play with my friends.

Saturdays were competition days, a chance to get your handicap down and maybe even take some money from the older guys (everyone was an older guy compared to me).

One of my first or it could have been my first ever Saturday competition, I was very anxious and nervous. I didn’t know anybody. I wandered up to the first tee with my tiny little golf clubs and a nervous smile on my face expecting to see three stern looking old men who didn’t really want to play with a little kid who’s just learning.

What I found was the exact opposite!

Three guys stood with big smiles on their faces having a laugh and a joke, they made me feel comfortable instantly. I felt even more comfortable when I watched two of them hit their balls straight into the water.

The one guy who had hit the green was Founder of Golf in Society Anthony Blackburn.

Although it turned out to be the only green, he hit that day, he made my first experience of competitive golf a fond memory, for this I am forever grateful.

I came in and out of golf through my teenage years, trial of life kept me away from golf for around 6 years. An outcome from my challenges had been the realisation that if I was to spend my time doing anything, it should have a positive impact on someone else.

I then decided to play golf again, I headed up to RCGC where it felt like I had never been away. One Saturday I headed to the tee where I noticed I was playing Anthony again, as if my golf life was coming full circle.

During the round Anthony told me about his Social Mission, Golf in Society. (https://golfinsociety.com/about/)

I was very interested in getting involved, this later led to me getting invited to some of the dementia & Parkinson’s golf days that Golf in Society run at Rudding Park Golf Club in North Yorkshire. (https://golfinsociety.com/current-golf-therapy-sessions/)

My experience was for no better word to describe “wholesome”.

The first thing I noticed was the genuine compassion and empathy that everyone had for one another, The outcome being an extremely enjoyable day where I got to spend time with people in their later stage of life who had been given obstacles that would only deteriorate and debilitate as time went on such as dementia & Parkinson’s.

Throughout the day I noticed some key aspects that really stuck with me.

Firstly, the warm welcoming atmosphere created by Anthony (Founder/Golf activator) as people arrived at the club, the caregivers left their loved ones in his capable hands while they went over to the clubhouse for tea and cakes.

The golfers then entered a world of banter, comradery and friendly competitiveness.

There was a range of golfers, from people who had always played golf to people completely new to the game.

I got to watch how a new client was integrated into the group and how the companionship of new friends really had an impact on him. The following week he was back again, and the group had gained another member. Proving to me how valuable the service that Golf in Society really is.

The Common Goal

I was aware of the benefits golf had on my own personal mental health and wellbeing, the feeling of bettering myself and the constant strive for improvement gave me a sense of purpose on the course.

The outdoors, nature and tranquillity gave me a place to reflect on my goals.

After spending a few days helping Anthony run sessions I realised we had a common goal.

To make a positive impact on society.

This solidified in my mind that Anthony’s & Golf in society’s mission was something I needed to be part of.

Although the way that I do that is always evolving.

I really can’t put into words the value of the service that Golf in society provides and the significant impact it has on the individuals involved and as you zoom out, the impact it has on how we approach helping those that have some difficulties later in life.

It truly is a social mission.

It truly highlighted for me the importance of making those later stages in life meaningful and purposeful.

To this day I feel motivated to contribute to the social movement that Anthony has started, and I will continue to do so.

Feel free to follow my journey as I navigate my way through life.

Written by Aidan Carswell

Golf In Society perfectly aligned with the NHS Ageing Well plan

Since I started Golf In Society four years ago, I’ve really struggled to get referrals from NHS professionals, in particular Primary Care Networks (PCN’s). It’s been a series of disappointments that at times make you consider whether there is demand for your social enterprise.

To me it’s always seemed a “no-brainer” that a service that enables people to improve their physical activity, stimulates cognitive function, increases social engagement and supports primary carers in a single intervention would be embraced by PCN’s.

Despite numerous visits, communication and distribution of leaflets, generating new referrals from PCN’s has remained a challenge.

However, after reading the Ageing Well part of the NHS long term plan it’s made me realise that Golf In Society is perfectly aligned with the ambitions of PCN’s.

It also leads on very nicely from the fact I mentioned yesterday that 1.7 million hospitals days are taken up by older people with dementia.

Before you read the sections taken from the Ageing Well NHS plan, here are two graphics that highlight the positive impact we have on people’s lives every time we deliver one of our golf sessions.

So let’s start by looking at the commitment from PCN’s to the Ageing Well long term plan.

NHSPrimary care networks will from 2020/21 assess their local population by risk of unwarranted health outcomes and, working with local community services, make support available to people where it is most needed.

Based on their individual needs and choices, people identified as having the greatest risks and needs will be offered targeted support for both their physical and mental health needs, which will include musculoskeletal conditions, cardiovascular disease, dementia and frailty. Integrated primary and community teams will work with people to maintain their independence: for example, 30% of people aged 65 and over,  and 50% of those aged 80 and over, are likely to fall at least once a year [9]. Falls prevention schemes, including exercise classes and strength and balance training, can significantly reduce the likelihood of falls and are cost effective in reducing admissions to hospital [10].

That’s the first box firmly ticked. You only have to see our golfers in action to see the difference it makes to their physical well-being and confidence. Here’s an interesting fact for you.

In over a 1000 hour of golf we’ve had no falls that have resulted in a hospital admission. Sure, we’ve had a few trips and stumbles but nothing that a quick brushing down and reassuring conversation hasn’t fixed.

So let’s move on to the commitment to carers who have for too long been the forgotten victims of Ageing Well agendas.

NHSCarers will benefit from greater recognition and support.

 The latest Census found that 10% of the adult population has an unpaid caring role, equating to approximately 5.5 million people in England – around 4 million of whom provide upwards of 50 hours care per week. 17% of respondents to the GP patient survey identified themselves as carers. Many carers are themselves older people living with complex and multiple long-term conditions. We will improve how we identify unpaid carers, and strengthen support for them to address their individual health needs. We will do this through introducing best-practice Quality Markers for primary care that highlight best practice in carer identification and support.

A huge tick in this box. When I started my social mission I’d never really considered the positive impact it would have on the lives of carers. The testimonials we receive from carers say it all.


And finally, let’s take a look at the commitment to dementia support.

NHSWe will go further in improving the care we provide to people with dementia and delirium, whether they are in hospital or at home.

 One in six people over the age of 80 has dementia and 70% of people in care homes have dementia or severe memory problems. There will be over one million people with dementia in the UK by 2025, and there are over 40,000 people in the UK under 65 living with dementia today [11]. Over the past decade the NHS has successfully doubled the dementia diagnosis rate and halved the prescription of antipsychotic drugs [12]. We have continued to improve public awareness [13] and professional understanding. Research investment is set to double between 2015 and 2020, with £300m of government support [14]. We will provide better support for people with dementia through a more active focus on supporting people in the community through our enhanced community multidisciplinary teams and the application of the NHS Comprehensive Model of Personal Care. We will continue working closely with the voluntary sector, including supporting the Alzheimer’s Society to extend its Dementia Connect programme which offers a range of advice and support for people following a dementia diagnosis.

I think this is where our service stands out as a perfect example of how a single intervention can be designed to meet the personal needs of ageing adults and their carers, no matter what challenges come their way later in life.

With over 450 golf sessions successfully delivered and so many lives transformed, I think we’ve earned a few “ageing well stripes”.

The desire to convince PCN’s to commit their support to our innovative intervention and why embracing it makes so much sense burns brighter than ever. It really is a “no-brainer”.

Hospitals and the Big D

I think we all agree that hospitals are the worst place for people living with the Big D to spend time.

Unfamiliar surroundings filled with strangers trying to talk to you are challenging situations to deal with at the best of times, let alone in a busy clinical environment. “Where am I?, who are you?, leave me alone, get off me” will be all too familiar comments made to hospital teams when treating patients with dementia. For the purpose of this blog I’m going to call them D-patients.

I realise that in certain circumstances there’s no alternative to a hospital admission. However, I’m sure we all agree that this needs to be kept to an absolute minimum for D-patients.

This is why I was saddened to read the recent Public Health England report titled “Older people’s hospital admissions in the last year of life”.
Older people are classed as 75 years and older. According to the report the largest total number of days spent in hospital (1,760,801 days) was in people who died from an underlying or contributory cause of death of dementia (see bottom chart).
As far as I can gather we need to address three issues here. Firstly, reduce the number D-patient admissions. Secondly, discharge them sooner into the safety and comfort of the place they know as home. And finally, reduce the number of D-patients passing away in hospitals.

As you can see most admissions for D-patients are emergencies. My experience as a carer leads me to believe that a large number of these admissions will have been as a result of a trip, slip or fall at home. Emergency services will probably have been involved.

In order to make my point, I’m going to share a harrowing incident I witnessed during my early days as a carer when an elderly man fell at home. His wife was too frail to pick him up. He was in a state of undress. When the ambulance arrived they couldn’t lift him safely. They called for more assistance. In the end three ambulances were on site and he was carried down the stairs using a bed sheet. You can imagine the distress this caused.

Three days after being discharged the gentleman had another fall in his bathroom and was hospitalised again. He never got the chance to live at home again as he was discharged into a nursing home. He died soon after.

The outcomes could have been so much better had the necessary adjustments been made to his home.

He would have lived longer, safer and independently in his own home that he adored so much. There would have been fewer emergency interventions, hospital admissions and number of days spent in an environment that caused him so much distress.

So my main point is that we all need to work much harder on keeping people living with dementia safe and secure in their own homes for longer. With the necessary adjustments to their living space this can be achieved.

If we achieve this then the outcomes will be fewer D-patient admissions, quicker discharges and more people spending their last year of life in their own home.

Imagine the positive outcomes for D-patients and the NHS if we reduced the 1.7 million hospital days by a third. Believe me, it’s achievable if we get the right primary and preventative measures in place when families first receive their dementia diagnosis.

We all know how distressing hospital stays are for D-patients. That’s why reducing the days spent in hospital is such an integral part of my D-plan.

Golf plays its part in bridging the generation gap

Something very special happened yesterday at one of our weekly golf days for people facing the D-challenge.

We’ve recently recruited a new golfer who apart from being a past-captain, is also a life-long Bolton Wanderers fan. He loves his weekly “golf-fix” with us.

As it’s half-term his grandson was with him who is also a Bolton fan. He was a proper little gentleman. I offered him the chance to join us but he said he was going to hit a few golf balls with his grandma on the range.

So far in this inter-generational tale we’ve got a golfer getting ready for his day with us, a grandson about to practice with his grandma and two Bolton fans from different ends of the generation scale.

The next part of the story couldn’t have been written if we hadn’t taken the time to get to know our golfers and their background.

I knew that in a few minutes one of my golfers would arrive who had played for Bolton and been taught to head the ball by the footballing legend, Nat Lofthouse.

Right on cue Jim arrived with his wife. I called Jim over to meet a young man who I introduced as a Bolton fan. They immediately hit it off and started chatting about their love of football, one starting out on his career and the other with a very special one already in the onion bag.

To hear them both talking about technique, tactics and skills as well as sharing their football experiences were yet more priceless memories for our ever-growing archive of champagne moments. Jim’s advice on taking penalties (he never missed one) was brilliant for a young footballer to hear as he makes his way in the game he loves so much.

The happy ending to the day was that Jim was in the winning team and left with our weekly champagne moment trophy. And by the way, the D-word was never mentioned once.

Yesterday was another perfect example of why bringing communities together at golf clubs makes so much sense in so many ways.

The D-Plan – Let’s start by facing up to the challenges

Terry Pratchet got it spot on when he talked about how many people were in the firing line of dementia. He’s passed now but the challenges he alluded to still remain unresolved.

In order to deal with the dementia crisis we need to start by being open and honest about some uncomfortable, unpopular and unpalatable truths.

So here’s a few to start with…

  1. Diagnosis takes too long
  2. Support services are inadequate and arrive too late
  3. Families try and cope too long without seeking help
  4. Current resources cannot provide person-centred support
  5. Dementia carers are underpaid and overworked
  6. Health & social care commissioners are not embracing innovation
  7. Traditional systems & procedures are not fit for purpose
  8. Everything is too complicated
  9. Insufficient budget gets through to front line services
  10. Our health & social care leaders are failing to stand up to the scale of the crisis

My final and most important point is that we’re failing to give people the human right to live with dignity and respect when dementia comes knocking at their door.

Anyone starting to get defensive at this stage should probably not read any further. For those who realise that we need innovation, radical reform, future proofed support services and share my passion to transform the future of dementia care then please read on.

So let’s start with the exciting, positive and creative stuff.

Everything in dementia support needs to be designed with the families at the heart of it. Nothing should be too much effort. Dignity, respect, compassion and positivity need to be core values. Current leaders need to remember that at the heart of every diagnosis is an individual and a family with the human right to live life too.

So here’s some of the key elements that make up the framework in which we need all need to operate if we are to future proof dementia care.

  1. Early & accurate diagnosis
  2. Start planning early for the changes & challenges ahead
  3. Allow people to keep doing their favourite things
  4. Keep relationships intact (don’t let loved ones become carers too soon)
  5. Introduce new environments and support networks early on
  6. Create positive, inclusive and accessible environments
  7. Keep life as normal as possible
  8. Provide everyone with a sense of purpose
  9. Never mention the D word
  10. Compassion not sympathy please
  11. Nothing is ever too much trouble
  12. Over 70 % of all resources allocated to front line services

Seismic change is required in current thinking, policy and strategy. Research into finding a cure needs to be clearly separated from the support for families diagnosed for whom a cure will arrive too late.

The good news is that if we face up to these challenges now and work within a framework where families and front line services are at the heart of everything, then dementia care can be affordable and available to every family when this terrible disease decides to enter their life.

In the next blog I’ll share the part of my D-Plan on how to ensure early diagnosis and how to create a supportive structure for every family.

The D Plan – A view for a brighter future from the dementia coalface

It’s interesting to hear all the visions, strategies, pledges, commitments made every week to solve the crisis in dementia care. The volume and frequency of the rhetoric always seems to intensify around important political events or awareness campaigns. Within a few days or weeks they often fade away with very little impact.

There’s a really good reason that the crisis in dementia support is deepening rather than improving. It’s because most of the rhetoric and strategies lack the invaluable insight and lived experience of the people working at the coalface of dementia care and the families they support.

For those of you like me who spend their lives at the coalface of delivering dementia services, you will share my frustration at the increasing number of failing strategies, policies, and support systems that have no chance of transforming the devastating impact of dementia on families living in all our communities.

The future cannot be waiting for cross-party political consensus on the future of social care. There you are, I’ve said it publicly now.

Any future dementia care vision & strategy is doomed to fail if it ignores the views, needs and creative ideas from people who live and work with dementia every day.

However, there is a really simple plan that could transform the lives of so many families facing this devastating and deadly disease.

You may ask yourself, what gives me the right or credibility to talk about the future of dementia care?

I have no “ology” or letters behind my name. I’m not clinically or professionally educated in neurological science, occupational therapy, mental health or adult social care.

However, with a five year track record as a dementia caregiver and successfully delivering over 400 golf sessions for people diagnosed with dementia and their carers, I think I’ve earned my stripes at the dementia coalface to form a constructive & innovative view on the future of dementia care.

As we all approach a new decade of living with dementia, now is the perfect time to embrace pioneering, innovative support services built on lived experience and designed in partnership with the families they support.

I call it my D-Plan “Future proofing better lives for families living with dementia”

In the year ahead I’ll start sharing the D-Plan with you. All I ask is that you embrace it with an open mind and remember that it has been designed with dementia families at the heart of everything.

Happy New Year to you all. X

More Proof Why Golf Is A Wonder Drug

Who would have know that golf is one of the new wonder drugs. It has the power to reduce chronic illness, improve healthy ageing, reduce loneliness, give people a sense of purpose and reduce the inactivity timebomb facing our nation.

A few weeks ago I had the pleasure of listening to the attached presentation by Dr William Bird from Intelligent Health. It was the most compelling and thought-provoking medical presentation I’ve ever witnessed. A wonder drug called FITERIX was introduced to us that has all the necessary ingredients to transform the health & wellbeing of our ageing popualtion.

During the presentation we all took part in a poll as to how much moderate exercise we had completed the day before. The audience of nearly 200 people were all asked to keep their hands up as Dr Bird kept increasing the number of hours achieved. Most people had their hand up at the 30 minute point. Half the people put their hand down at one hour. Only twenty people still had their hands up at the two hour mark. I was one of only six people left with their hands up as achieving more than three hours moderate exercise.

When asked to explain how I’d managed to fit so much exercise into my working day my reply was simple ” I play golf every day and support others to enjoy the game too”.

Here’s the link to Dr Bird’s full presentation. It’s the most compelling argumentation ever as to why GOLF FITERIX should be socially prescribed and made more accessible to families throughout the UK.