With people living for longer, dementia is one of the greatest health and care challenges faced by society today. Dementia is likely to affect most of us one way or another during our lifetime.
1 in 3 people will develop dementia during their lifetime and it is estimated that 1 in 3 people will care for a person with dementia in their lifetime (many will be unpaid carers). About 900,000 people in the UK are currently living with dementia and 1 in 14 people aged over 65 has dementia. This rises to 1 in 6 for people aged over 80. Dementia can affect younger people too and around 1 in 20 people with dementia are younger than 65.
There are lots of different types of dementia (over 100 known types) and no two types of dementia are the same. Different types of dementia cause damage to different parts of the brain. The most common type of dementia is Alzheimer’s disease but the other three main types are vascular dementia, frontotemporal dementia and dementia with Lewy bodies. It is possible to have more than one type of dementia, a condition known as ‘mixed dementia’.
Dementia is progressive which means that most symptoms will get worse over time. The symptoms often associated with dementia are memory loss, difficulties with problem solving, problems with language, being confused about time or place and changes in mood and behaviour. A person’s experience of living with dementia will be unique to them and some people living with dementia may need more support than others or they may need support sooner than others.
There is no known cure for dementia yet. With all this in mind, I believe it is important to raise awareness of dementia, and the things we can do to support someone living with dementia. To that end, I wanted to share my Dementia Friends experience with you.
Dementia Friends is an initiative of the Alzheimer’s Society and is the actually the biggest ever initiative committed to changing people’s perceptions of dementia. The aim is to transform the way we think, act and talk about dementia.
I first came across Dementia Friends in 2015 whilst practising as a Court of Protection lawyer in Swindon. All of my clients had severe brain injuries, usually as a result of a road traffic accident or medical negligence. At that time, both professionally and personally, I did not know anyone who was living with dementia but having acted for vulnerable clients and also knowing the statistics around dementia, I wanted to find out more.
I attended a local Dementia Friends Information Session and it was a really positive experience. In fact, the impact of the session was so compelling, not only did I become a Dementia Friend, I also became a Dementia Friends Champion (essentially a volunteer role which has now been replaced by a Dementia Friends Ambassador). I left the information session with an increased understanding of dementia but also wanting to spread the word about these sessions and to get people both thinking and talking about dementia. If attending an information session could get me thinking differently about dementia, and what I could do to help, then surely it could have the same affect for others.
Over the coming years, I delivered a number of Dementia Friends Information Sessions to colleagues and others. It was a real privilege to get to do this and to see firsthand the impact of attending a session. I appreciated people taking the time to speak to me after a session or later by phone or email to share their personal experience of dementia and the ways in which attending a session had helped them.
I do not want to spoil the content for those who have not attended an information session yet but there are lots of important messages to take away and the bookcase and fairy light analogies are both extremely thought provoking.
For now, I will share with you five things you should know about dementia:
1 – Dementia is not just about memory loss
2 – Dementia is not a normal part of aging
3 – Dementia is caused by diseases of the brain
4 – It is possible to live well with dementia
5 – There is more to the person than the dementia
Dementia does present challenges, but there are plenty of things you can do to support someone living with dementia – for example by staying in regular contact with them, encouraging them to stay active by going for a walk or doing a jigsaw puzzle, or helping make their home safer (this could include adding automatic timers for lights and heating or installing smoke alarms and carbon monoxide detectors). Technology can also help you to live well with dementia too, for example medication reminders and locator devices. Where possible, support the person living with dementia to make their own choices and do things for themselves to help maintain their skills and independence.
You can also show your support by becoming a Dementia Friend. There are around 20 million Dementia Friends worldwide and this number continues to grow. Anyone can become a Dementia Friend, including children. A Dementia Friend is someone that learns about dementia and commits to an action – an action can be big or small, it does not have to be time consuming. An action could be as simple as wearing your Dementia Friends badge (a forget me not flower which represents remembrance and is long associated with dementia). You can become a Dementia Friend by attending an information session in person or virtually, or by watching an online video on the Dementia Friends website.
Organisations can also play a vital role in supporting people affected by dementia. You could organise an information session for your staff, fundraise or register your organisation’s details with Dementia Friends for more support. My firm, Thomson Snell & Passmore, has been recognised by the Kent Dementia Action Alliance as officially ‘Working to Become Dementia Friendly’ with approximately 25% of my colleagues becoming Dementia Friends and frequently supporting local organisations and community based events, including Age UK memory cafes which help support those living with dementia and their families.
When it comes to dementia, every action helps and I hope by reading this you feel inspired to take your own action.
To become a Dementia Friend or to find out more about Dementia Friends please do visit dementiafriends.org.uk You can also find Dementia Friends on Facebook and X (formerly Twitter).
For more information about dementia or dementia support, please visit Alzheimer’s Society or call their Dementia Support Line on 0333 150 3456 and for extensive print and online publications about dementia please visit Print and online publications about dementia: Full list | Alzheimer’s Society (alzheimers.org.uk)
Charlene Hughes has over twelve years Court of Protection experience as a qualified lawyer in Property & Affairs Deputyships acting for clients with acquired brain injury. Charlene now works as a Professional Support Lawyer in the Court of Protection team at Thomson Snell & Passmore, one of three Legal 500 tier 1 Court of Protection teams in the country, based in their Tunbridge Wells office.