I’m sorry I haven’t been able to blog for a while. I'll try to make up for my absence by offering you a perspective on an aspect of dementia that is dear to my heart but is less often heard, yet vitally important.
I want to discuss the role of carers from the point of view of a person who is living with dementia and to point out some of the ways in which we can help to lighten the load of our carers as they accompany us and look after us as our journey into dementia continues and worsens.
So. What qualifies me to make these observations and suggestions?
Well. Please allow me to remind you. On Friday, 11th of January 2019, I received a diagnosis of Alzheimer's disease.
Five and a half years later, I can only recall fleeting memories of the event.
I recall that my wife Pam and I sat nervously in the waiting area for what seemed like an eternity before being called into the consultation room.
I remember being shown my brain scans and examining the voids around my hippocampus while the Neurologist lectured us about "amyloid plaque" and "neurofibrillary tangles. "Cell dysfunction" and loss of "neuronal connections".
And I remember Pam and I looking at each other with a mixture of relief and bewilderment as we were handed a pile of books, leaflets and flyers and ushered out of the office.
At that moment, our lives changed forever.
We were both overwhelmed with mixed emotions as we left that consultation room. We were shell-shocked and bewildered, carrying new labels that would shape our lives from that moment on. Mine read 'DEMENTIA,' and Pam's, 'CARER.'
Now, I'm okay with MY label; it's immediately descriptive of my medical condition. Pam, however (and I suspect most people given their "carer" label on the diagnosis of their significant other), did not and still does not see herself as a carer in the classic sense.
Pam currently describes herself as my P.A., and that's a pretty good description of the level of care I currently require.
But I digress.
As I say, we stood up and left the consulting room, and as the door closed, a new chapter of our lives began…
For me, the crushing realisation was that I would have to give up the job that I loved and take early retirement—robbed of the experience of leaving the workplace with my head held high, accompanied by warm wishes, slaps on the back, and handshakes from my workmates.
The knowledge that I am on a path of decline for which there is no cure, with an inevitable decrease in my cognitive functions and abilities.
And for Pam, the shouldering of responsibilities that will only grow over time, perhaps isolating her and causing a long and painful bereavement process that will start long before my death as my abilities and cognition decay.
The long goodbye.
We soon realised that we would receive little help from the medical establishment. There is still no Dementia Pathway in England, so after diagnosis, you are more or less on your own unless you reach out yourself to find advice and assistance.
The Neurologist had given us a pile of books, leaflets, flyers, and trifold brochures on a plethora of different topics, some of which were not applicable or relevant to us and many of which were full of densely packed information that; frankly, we were in no condition to take in at the time. There seemed to be no information on local services and support, and it appeared that little thought had gone into preparing us for our lives after diagnosis.
My first thought was,
"What about Pam?".
"What will be the extent of the challenges she may face when she takes on the mantle of carer?".
"What can I do to minimise the impact on her health and well-being?".
It was apparent that Pam's role as my carer would eventually become pivotal, and maintaining her sanity and well-being was crucial to allowing her to function as such.
So, we sat down together and discussed the future. We investigated the role of the unpaid carer in society, evaluated what might be in store for Pam over time, and discussed how we might mitigate future problems. We shared our fears, hopes and dreams.
We realised then that we would have to engage in some serious research and more discussion if we were to come to terms with our new reality and plan our strategy to navigate the safest course through the stormy waters ahead.
We embarked on a mission to understand more about the role of the unpaid carer in society to anticipate some potential problems. Here are a few of the things we learned:
Most people will have caring responsibilities at some point in their lives.
The 2021 census estimates the number of unpaid carers in England and Wales at 5 million. This, together with ONS Census data for Scotland and Northern Ireland, suggests that the number of unpaid carers across the U.K. is 5.7 million, Which means that around 9% of people provide unpaid care. However, some research from 2022 estimates the number of unpaid carers could be as high as 10.6 million.
Nearly half of England and Wales's unpaid carers provide 20 hours or more of care a week.
Over the period 2010-2020, 4.3 million people became unpaid carers every year— That's 12,000 people a day.
Most unpaid carers are women; women are more likely to become carers and provide more hours of unpaid care than men.
We were amazed by the size of the army Pam had been newly conscripted into, but we soon realised that these conscripts were thrown into the front line without any training and with little support. Yet, they adapt, they learn, and they continue to provide care with unwavering dedication.
I was fortunate to be able to help Pam plan for some of the eventualities that might occur. We realised that together, we could work out coping strategies to help in any situation we foresee going forward.
First, we looked at our current skills and abilities.
I could still drive. I had passed the DVLA assessment and, with the aid of a SATNAV, am still a safe and competent driver.
Pam is also a driver and has cared for adults with special needs for over a decade. She has an NVQ level 3 in caring and knows the relevant legislation and practices. Crucially, she has also acquired the patience and communication skills that will become increasingly useful over time.
We scoured the internet for valuable hints and tips and consulted with our network of friends and family.
We dug out the books, leaflets, pamphlets, etc., that we had been given on diagnosis and read them all from cover to cover. Most were useless.
We read online articles and research papers.
It was a voyage of discovery with a clear destination in mind. We wanted to be as well prepared as possible to face the problems that we would inevitably encounter. This proactive approach gave us a sense of control and empowerment in the face of uncertainty.
We made a checklist of the primary priorities:
Reviewing our wills
Drawing up Lasting Power of Attorney (LPA) documents for both Finance and Property and Health and Welfare
Informing family and friends - My dementia is simply a fact of life, not a dirty secret, so I had no problem with being open and honest about my diagnosis.
Straight after addressing these vital priorities, we examined the fabric of our current lifestyle. We thought about how we might maintain and preserve it for as long as possible while transitioning gently through the changes that will inevitably be necessary.
To do this, we first had to understand what made us tick.
We made a list of things that might cause problems in the future and devised strategies to mitigate or eliminate them.
Pam values the sociability and pleasure she derives from her work, and we wanted to ensure that we had mechanisms in place to allow her to continue in her workplace without having to worry unduly about leaving me unattended.
So we looked at her routine and worked out a messaging and reminder system that allows Pam to monitor me remotely, exchange messages, and prompt me to perform routine tasks.
A geolocation App ensures that we both know each other's whereabouts at all times. It also means that I am alerted when Pam leaves her work location for her journey home, which allows me to prepare a meal for her arrival and makes me feel useful.
Please bear with me while I outline one or two potential problems we identified and explain what we did to mitigate them.
Passwords and personal details:
I have been very active online since the mid-1980s. I have a massive list of usernames, passwords, accounts, and memberships, some of which have active subscriptions. I am always careful to use unique, complex passwords, and never use the same password twice.
I have a system that works for me, but I needed to make it readily available to Pam in case she needed to take over and manage my online affairs and identity.
So, I invested some time and effort in transferring all my logins, passwords, and personal and banking details into a secure App that uses a single login.
Now Pam can use a biometric login to access ALL of the information, so she can manage direct debits, standing orders and subscriptions quickly and efficiently.
And that's a weight off my mind.
Then, we looked at our well-being and what support might be available should we ever need it.
We investigated the dementia-related support services available in our local area. In the days before the COVID-19 pandemic, there was precious little online activity and videoconferencing, so we tried to find some local support groups - We found one.
Luckily, volunteering at my local library and with the Alzheimer's Society provided great networking opportunities. I knew some local groups and organisations supporting people with dementia and carers. And Pam and I went to one in our local town run by a well-known national voluntary group.
A Rotary Club ran a weekly group in a nearby town, but we didn't feel welcome when we visited. I was much younger than anyone else there, and they viewed us suspiciously. We felt like intruders and were largely ignored by the "regulars".
It was a disaster!
One or two of the very elderly patrons who were deep into dementia might have been okay with these infantile, unadventurous activities, but Pam and I simply looked at each other in shock and backed out of there as soon as we could make a reasonable excuse.
The volunteers were sincere and genuine, but their idea of a group session was to infantilise and patronise the people living with dementia and to try and divert us with simplistic, repetitive and frankly
tedious distractions like colouring in children's books with crayons and singing Vera Lynne songs that were popular decades before most of us were born.
Then, we discovered a monthly group run by the Alzheimer's Society. It was a bit of a trek, but we went along.
Once there, those who were carers were separated from the people living with dementia, and the facilitators put us into different rooms.
Neither Pam nor I enjoyed it.
We wanted to do things together.
I found the activities totally unchallenging and aimed at people much further down the road into dementia than me. Pam found the stories of other carers full of gloom and misery - we were both unhappy and were somewhat relieved when the lockdown made it impossible for us to go!
Post-lockdown, the few services we had used had disappeared, and we began our search again.
It soon became apparent that there is a postcode lottery in the U.K. Some areas, mainly urban ones, are well served, but many places are barren of anything but rudimentary services, and these services come and go depending on who has the contract to provide them.
We looked for a directory of national, regional and local services for carers. Still, we could find nothing that fitted the bill - not surprising, seeing that there is so little standardisation of services in what has become primarily a "marketplace".
We were surprised that our County Council and NHS Trust could only provide us with limited information and did not keep a register of current services.
We looked at many online caregiver groups and forums, but we found that the messages were less about support and coping strategies and more about people telling horror stories, venting their frustration and bemoaning their lot. This was a most depressing experience.
The experience taught us that more than good intentions are needed to run a successful support group. You also need a coherent structure and relevant training to understand and cater to the needs of those attending.
Next, we went to another group run by a local government-contracted NPO.
What a difference!
Quizzes, games, chairobics, talks from visiting guests... Carers and people with dementia enjoy the same things together, unsegregated. Yet, one-to-one sessions are available for any carer needing advice or guidance.
All the group members look after each other and share experiences and coping strategies thoughtfully and collegially.
Better still, they welcome the more capable people to co-present and facilitate some of the activities - an absolute joy.
We enjoy attending this group, and it is a great comfort to me to know that Pam will have their support if she needs it, but places in groups like this are limited. There are often long waiting lists, which can only be possible for those with transport.
So. In a nutshell. What are our conclusions? And what have we managed to do to mitigate the pitfalls and problems we foresee?
Once established, an open, honest dialogue allows free and frank discussion, leading to better outcomes. We discuss, explore, and construct workarounds and solutions.
Although it is not a panacea, future planning has allowed us to anticipate many of the potential problems that may be encountered on our life journey.
Caring can be a lonely task - We have established a reliable support network.
Research pays dividends - We are always looking for dementia and caring-related news and information both locally and regionally.
Family and friends are important—knowing you're not alone is heartwarming! Pam and I are deeply grateful for the support system of friends, family, and healthcare professionals who have been there for us every step of the way.
In conclusion:
I realise I've tried to cover a lot of ground in a short time and have probably raised more questions than I have answered.
But my core message is a simple one.
Carers are undervalued, under-resourced and often under pressure.
They are taken for granted by a system that does not value their contribution to society.
Carers are HEROES. And I'm glad to have the opportunity, on behalf of the legion of people with dementia who are further along the journey than me, to thank each and every one of you who may chance to read this, for the often thankless and heartbreaking task that you so selflessly do.
CARERS MATTER.
Society MUST care for our carers.
Training, resources, support, respite—all are in short supply. Yet, the efforts of our carers allow people living with dementia to stay independent for longer and enjoy a better quality of life, saving vast sums of money, time, and resources for the NHS.
So let's roll out an NVQ for unpaid carers. Even some online training would be worth its weight in gold. Health and Safety, Kinetic Lifting, coping with stress, effective communication, etc., are all essential skills for carers that every carer in paid employment would be expected to know. Information on benefits and technology would also be helpful.
Let's design some simple guidance that includes the carer's perspective and needs in parallel with those of the diagnosed person.
Let's have a yearly carer medical assessment.
It's long past the time when these things should have been in place, and we need YOU to get behind us.
So. Get active, get out there, and campaign for small changes that will improve the number of carers and, by extension, increase their ability to keep those they care for happy, healthy, and independent for longer.
Together, we can achieve change.
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