BLOG: Talking about dementia

21st May 2021

By Tom Rose, Admiral Nurse Clinical Lead at St Barnabas Hospice

This week marks dementia action week. A recent report by Alzheimer’s Research UK showed that half of the UK public know someone diagnosed with dementia, usually a family member. In addition, One million people in the UK will likely have dementia by 2025; one-third of people born in the last few years are likely to develop dementia.

These are startling figures. Dementia is not a small issue tucked away that doesn’t affect anyone. Sadly, there are still lots of misconceptions and misunderstanding about what dementia is.

What do we mean by dementia?

Dementia is an ‘umbrella term’. It describes many different diseases and problems with our brain. There is no set course for someone with dementia. Everyone will be affected differently although there are some commonalities. Common effects include increased forgetfulness about recent events, not being sure of the date and time, or finding it hard to understand what others say to you. Other issues can also appear, such as hallucinations or depression.

How does dementia develop?

This is a more difficult question to answer. We don’t fully understand why some people get dementia, and some don’t. However, we do increasingly understand some of the risk factors. There is lots of research happening to understand this better, but there is still lots of work to do.

What we do know is that Dementia is NOT an inevitable part of ageing, but it is more common as we get older. There is a process happening in the body that is preventing the brain from working properly. Over time this causes permeant damage to the brain, which is why we then see issues such as increased forgetfulness.

This depends on what is causing the damage in the first place. For example, Alzheimer’s disease, which is the most common cause of dementia, happens when a build of proteins inside the brain damages brain cells. Vascular is usually caused due to the damage from a stroke or gradual damage to the brain’s blood vessels, which prevent them from working as well as they should.

How does dementia affect people?

This depends on what is causing the damage in the first place. For example, Alzheimer’s disease, which is the most common cause of dementia, happens when a build of proteins inside the brain damages brain cells. Vascular is usually caused due to the damage from a stroke or gradual damage to the brain’s blood vessels, which prevent them from working as well as they should.

Dementia affects everyone differently. It can affect our cognitive, psychological, and emotional wellbeing. It also changes how well people can manage some tasks. It can also impact physical health.

Changes in memory abilities are the main effect people notice first. For example, when it becomes harder to remember names, arrangements to meet friends or use domestic appliances. Often as time goes on, people will find it harder to find the right word or describe something to other people. The person may find it increasingly difficult to ‘multitask’ or complete previously easy jobs.

For some, they may find that they see or hear things that other people don’t. The person may find it more challenging to express emotions and become frustrated because of this. Depression can also happen both because of this frustration and because of the changes that are happening in the brain.

As time goes on, people may find it more challenging to manage things independently and so need more support with things like shopping or personal care.

Dementia doesn’t just impact the person experiencing memory issues. It affects families and loved ones as well. Often families feel uncertain about how best to support a loved one or struggle to discuss their concerns. Dementia can affect people relatively early in life (about 5% of people with dementia are under the age of 65), so there may be implications for working or finances.

Is there treatment for dementia?

At this point in time, there is no treatment to prevent or cure dementia. Once a person develops dementia, they will have it for the rest of their lives. Again, lots of research is happening to find a cure, but this is proving difficult.

Some medicines can help with the symptoms of dementia and maintain physical health. These are typically only prescribed after a specialist assessment and diagnosis as they are not suitable in all cases.

Can I prevent myself from getting dementia?

Because we don’t know why some people get dementia, we can’t predict what will happen. However, we know there are things that we can do to reduce the risk of dementia. Many of these things good ideas anyway, such as taking regular exercise and eating healthily.

There are 3 key things that we should focus on

  1. Love your heart – exercise and diet to reduce issues like high blood pressure, cholesterol and control diabetes will help reduce the risk of several health conditions.
  2. Stay sharp – keeping mentally active helps the brain stay agile and build ‘cognitive reserve,’ which helps offset difficulties later. There isn’t strong evidence to suggest that any particular activity is better than another.
  3. Keep connected to other people – social activity is just as important as a physical or mental exercise.

Other health conditions can affect the risk of dementia in later life, including early hearing loss, alcohol consumption, obesity, depression, diabetes and smoking.

There is also lots of research on the effect our genes play on the risk of developing dementia. It seems that there may be some links that increase our risk but do not guarantee that we definitely will develop dementia.

Where can I find out more information?

Several organisations provide information and support nationally.

Dementia UK – www.dementiauk.org – support Admiral Nurses throughout the country who provide specialist support for families living with dementia. They also have a national helpline on 0800 8886678

Alzheimer’s Society – www.alzheimers.org.uk – also have information resources about dementia.

Alzheimer’s Research UK – www.alzheimersresearchuk.org – have information, statistics and resources about the current state of research into treatment and prevention of dementia

Here at St Barnabas, we offer support for families living with dementia in Lincolnshire when things are particularly complex or difficult to manage. We can be contacted on 01522 551250 or admiralnurses@stbarnabashospice.co.uk. If you feel that a referral to the service would help, speak to your GP or other supporting health and social care teams who can refer you directly to us.

You can sign petitions to call on the government to increase funding for dementia research. Current dementia is the only top 10 cause of death with no treatment. Yet, it receives a quarter of the budget that cancer research does. Alzheimer’s Research UK is calling on the government to honour commitments previously made to this (Sign our petition for dementia research | Alzheimer’s Research UK (alzheimersresearchuk.org)).

The Alzheimer’s Society is also calling on the government to improve the funding of care for families living with dementia as a majority of users of care services are likely to have dementia Sign our petition to #CureTheCareSystem | Alzheimers Society

Lastly, you can also become a research participant in increasing our knowledge about dementia. By signing up, you can participate in studies to better understand risks associated with dementia and help find cures and treatments. This can be done by anyone whether you are impacted by dementia currently or not Join dementia research – register your interest in dementia research : Home (nihr.ac.uk)

 

Take Part

Sign up to take part in one of our great fundraising events including the Colour Dash, Moonlight Walks and Light up a Life.

See our events

Volunteer

Make friends, use your know how, make a difference. We are grateful to the hundreds of people who give their time each week.

Register your interest