There are currently around 850,000 people with dementia in the UK, this is projected to rise to 1.6 million by 2040. Two thirds of the cost of dementia is paid by people with dementia and their families. Unpaid carers supporting someone with dementia save the UK economy £13.9 billion a year. There is no cure for Alzheimer's disease or any other type of dementia (source the Alzheimer's Society).
The long goodbye ....
Dementia is something that has come to challenge me and my family, now and in the past. There are very few families untouched by this cruel disease and yet there is no cure and it is very difficult to access help, carers feel alone and forgotten. Care is horrifically expensive and many don't even know how they can get help.
Dementia has many causes (and sometimes there is confusion over the term dementia and Alzheimer's), Alzheimer's is a disease that causes dementia. Other causes of dementia include vascular dementia, lewy body dementia and Parkinson's disease for example. However, Alzheimer's is the most common cause of dementia. The Alzheimer's Society explain it here.
September is World Alzheimer's Month with World Alzheimer's Day being today, Monday 21st September 2020.
And I wanted to do my part to raise awareness. Especially now. The situation for visiting loved ones in care homes due to the Covid-19 restrictions is horrifying and really unacceptable. The suffering for those living alone with dementia and the way lockdown exacerbated decline for dementia has been dreadfully sad. So many forgotten victims of Covid-19.
What I have really struggled with over the last few years and in more recent months is where to go for help. There is a lot of advice, helplines, leaflets, downloads etc available but it is not so easy when you need to make specific decisions for your own loved one. And of course lockdown just made it all so much worse - the health decline but also the fact that face to face meetings have stopped. Assessments had to be done over the phone or on video call and that just added to the distress for everyone.
So what have I found out that I think is essential for others to know? Here I share a few ideas that might help now and in the future.
First of all, your personal financial circumstances:
It is never too early to plan. You may think you have a Will in place but it probably isn't enough. You really do need to look at making provision should you need care in the future, you must organise Lasting Power of Attorney (LPOA) (one for finances and one for health and welfare) NOW (regardless of your age), you then register them and they are ready should you ever lose mental capacity and they be needed. It is easy to do yourself, or you can use a solicitor or a specialist firm (I make some recommendations further down this post). And just a note to clarify any concerns, the appointed 'attorney' can only use your LPOA once a doctor has confirmed loss of mental capacity.
Keep your savings separate from your husband or partner (there are other benefits to that too)! But you should have two separate savings accounts. If you ever need care then your savings are used to 'self-fund' down to whatever the current threshold is (you do get to keep some). Your partner then keeps his/her savings should care be needed.
Once you have used your savings then Social Services will do a financial assessment and if you or your husband are still alive and living in the shared home then the property is not part of any financial assessment. However if you or your husband then dies or needs care and does not live in the house any longer it will become part of the financial assessment and a debt held against it to be repaid once the house is sold.
There are options to lessen the impact of a future debt against your assets, but again it is important to research this sooner so you are not considered to have made 'deprivation of assets' to avoid paying for care. You should also check your house deeds and make sure that you are registered as 'tenants in common' where you each own 50% of the property.
It wouldn't be right of me to go into detail here as I don't know enough about it, but professional advice is essential! Don't leave it until it is too late.
But what about reducing your own risk of developing dementia?
Don't confuse menopause symptoms with worrying about early onset dementia, if you are in the menopause age bracket and you find your memory isn't great or you are suffering with brain fog then it is most likely caused by your fluctuating hormones. Please seek advice and consider HRT but try not to worry. I remember the difference being explained to me. If you walk into a room and can't remember what you went in there for ... you walk back out and then you remember and you go back. This is menopause and low hormones. If you walk into a room and have absolutely no clue why you are there and you walk away and never go back, you never remember, then you should speak to your doctor about a memory test.
I am also following with interest the research that is finding oestrogen can protect women from Alzheimer's. Another very good reason to seriously consider HRT. And a very good argument for staying on HRT for life. The benefits really do outweigh the risks. There is some good information on the Alzheimer's Society website - why are women more likely to develop dementia than men?
And the C-19 by Zoe Symptom Study (app) has also been doing some research as it seems women are less likely to get a bad case of Covid-19 and those with higher oestrogen (including being on HRT) have more protection. Dr Louise Newson talks about it here (just worth noting)!
But like all other aspects of our health we must look after the basics - stay active, eat healthily, don't smoke, drink less alcohol, exercise your mind and take responsibility for your own health. And there is never a better time than right now.
During World Alzheimer's Month, the Alzheimer's Society are encouraging us to talk about dementia ...
The following is from their website:
This World Alzheimer's Month, we are highlighting the importance of talking about dementia. We want to raise awareness of how it impacts the daily lives of people affected by the condition and challenge the stigma that surrounds it.
We know that receiving a dementia diagnosis can leave a person feeling very alone. We have also spoken to primary carers who feel isolated since their loved one received a diagnosis. But you are not alone — Alzheimer's Society is here to support you.
Let's shine a spotlight on dementia and highlight how taking the time to talk about dementia can have a huge impact for people affected by it.
Please join the conversation:
Living with dementia at any time is hard. Living with it during the Covid-19 pandemic is making daily life much harder for those with dementia and their families. There are campaigns to allow more visits to care homes - the UK charity John's Campaign has instructed lawyers to ask for a judicial review of government guidance that restricts family visits to loved ones in care homes.
From the BMJ website:
John’s Campaign, which campaigns for family members to be included in their loved ones’ care, said that its case for a judicial review against the visiting guidance was based on the belief that family members were not visitors but were integral to care home residents’ wellbeing and happiness.
The charity said that that guidance had fundamental flaws that were “rooted in the government’s failure to take account of human rights.”
It said, “There is no emphasis on the importance of meeting the individual needs and choices of care home residents, many of whom are living with dementia—a disability as well as a terminal illness.”
If you need support and advice my recommendations are:
Dementia and Alzheimer's UK Carers Group, a relaxed and friendly facebook group to support those caring for loved ones with dementia and an excellent source of information and advice.
Safeguarding Futures Health and Social Care Support, a facebook group set up to break down the barriers and myths regarding your rights when it comes to accessing health and social care support.
Dementia UK have an excellent helpline run by experienced and qualified Admiral Nurses.
The Alzheimer's Society is a fantastic resource for fact sheets about dementia and they also have a helpline and local representatives that can help you.
You can find out about becoming a Dementia Friend here and sign up for an online training session (about 40 minutes long).
And finally do you have a few moments to sign and share this petition 'please let me see my family before it is too late' thank you so much.
Update: after posting I heard about a really positive campaign that I felt was important to share as well.
The social care sector and especially care homes, have been faced with an unprecedented challenge as a result of the Covid-19 epidemic. Tasked with caring for one of the most vulnerable groups in society, many thousands of care homes have not only protected the health of older and elderly people but allowed them to thrive in this difficult time.
All our Gracewell care homes and care homes across the nation, have shown immense bravery, professionalism, and humanity over the last few months.
To raise awareness of this heroism, we have launched this campaign, which we hope will reaffirm the importance and value of care homes as we begin to emerge from this crisis. At their core, care homes provide a unique environment for older people to foster relationships, learn new skills and enjoy their later years.
A slightly different post for me but my blog has always been about helping others with some of the issues we all face as well as the lighter fun stuff like style inspiration and holidays!
And don't forget, let's talk about dementia, do email me or leave a comment.
Lots of love
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Hi, I’m Michelle and my blog Fifty & Fab is all about my journey into and through my fifties. I share style tips, health and fitness inspiration, I talk about my holidays and days out and I tell you about my beauty regime and my lifestyle. I hope you might pick up a tip or two and get some inspiration!
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