Five Reasons Why World Alzheimer's Day Is Important To Me…

Today is World Alzheimer’s Day and it’s a day which presents an opportunity to share why it’s very important to me – and many, many people like me.

My family lives with Alzheimer’s as my grandmother Dorothy, known as Dot, was diagnosed around five years ago. My mother Shirley and I have cared for her ever since with mum living with her now as the disease has progressed.   

Living with Dot and seeing this awful disease take her from us means that I personally will take any opportunity to raise awareness and also spread the word about dementia. 

This month is also World Alzheimer’s Month and theme for this year is, ‘let’s talk about dementia’. I agree with this sentiment, we do need to talk about it. It’s a good thing to educate people, campaign for more support for families living with dementia and to demystify dementia.

''Today there’s an opportunity to demonstrate how we can gradually overcome these issues and help people live well with dementia.'' 

What is dementia? 

Dementia is a syndrome, (a group of related symptoms) associated with an ongoing decline of brain function. There are different causes of dementia and different types.

Alzheimer’s Disease is the most common type of dementia, affecting between 50% and 70% of those diagnosed.

Other types of dementia include: vascular dementia affecting up to 20%, frontotemporal dementia, affecting 2% and dementia with Lewy bodies between 10 and 15%.

Symptoms of dementia include memory loss, confusion and problems with speech and understanding. It is a terminal condition which often gets progressively worse. 

Dementia statistics:

I’m sure most of us know someone, either in our family or in our circle of friends who has either suffered from dementia themselves, or has a relative with the disease.
 
Dementia is one of the biggest challenges we face, with nearly 54 million people living with dementia worldwide.

Research shows that more than 850,000 people in the UK are affected – and this is expected to rise to 1.6 million by 2040.

The condition affects one in 14 over the age of 65 and there are over 42,000 people under 65 with dementia in the UK.

More than 25,000 people from black, Asian and minority ethnic groups in the UK are affected.

Dementia affects the whole family:

Although it is my grandmother with this disease, the whole family has suffered watching her go through this – and it’s worth remembering that and having empathy. 

I have memories of my grandmother which I have to fight to hold on to as day to day she changes and moves further away from the person I remember. I know that my own daughter will not remember her in any way as I do. I will keep fighting for those memories and as my own child grows I will remind her of this wonderful, strong, supportive and loving woman. 

As you can tell, dementia impacts a family in many different ways and may mean some family members making huge decisions around where they live, whether they work or not in order to support a loved one with the condition. 

Some things we’ve had to think about as a family include:

• Developing predictable routines
• Not arguing with your loved on – let things go.
• Giving your loved one as much independence as possible.
• Having fun.
• Meeting your loved one in the now – don’t argue with them about lost memories.
• Accepting the disease is responsible for their mood and personality changes.
• Remembering the person is more than the disease.
• Caring for yourself and any other carers too. 

Having a family member suffering from this disease changes so many things. It can be difficult when meeting up with wider family members who we don’t see regularly, as they might not understand how seriously the disease has impacted on my Grandmother. Or they might be shocked by the different behaviour being exhibited. 

Some people are embarrassed and shy away, unsure of how to act. For me, the saddest thing with this disease is, you lose the person you love more and more every day.

My advice would be to find out about local support groups, and any training courses that could help you. At present many of these groups have moved online, due to the Corona Virus. Both the NHS, and the Alzheimer’s Society have information. 

https://www.nhs.uk/conditions/dementia/carers/
https://www.alzheimers.org.uk/get-support/help-dementia-care/understanding-supporting-person-dementia 

Are you dementia friendly?  

I run a business which specialises in block management – my team and I look after blocks of flats, including arranging maintenance, cleaning, gardening, insurance, and health and safety to communal areas. In other words, I look after people’s homes and some of those people are older. 

Because of my grandmother, it is important to me to be SEEN to be ‘Dementia Friendly’ in my company because of the first-hand experience of the devasting effect of this disease. I know my grandmother is safe in her home, because my mum is with her, yet not all people suffering from the condition are so lucky.

When I set up my property management business four years ago, I always planned to be dementia aware and dementia friendly so that no one – from a resident to a loved one to anyone in the communities I serve would feel worried or distressed around dementia.

I want my residents to feel safe in their home and to know that they or their families can contact us and will understand we are there to support them.

During lockdown, along with my team at Fraser Allen, I set up a team of volunteers to help those living in managed developments who were vulnerable or shielding. My team delivered shopping and contacted those who were vulnerable to make sure they were coping ok and had someone to talk to. 

I would encourage any business owners to consider being ‘Dementia Friendly’ too. This could be you have a retail shop and people can come in and won’t be turned away if they are acting strangely or confused – or you may be able to offer a friendly ear to an exhausted family member. How you support the cause is up to you – and for bigger companies it may open up conversations with members of staff who are having struggles at home around dementia. 

All sectors can become involved, and the Alzheimer’s Society have sector-specific resources you can download.

You can find out more here https://www.alzheimers.org.uk/get-involved/dementia-friendly-communities/organisations/resources-organisations