The 17th – 23rd of May is Dementia Action Week, a national event that sees the public coming together to take action to improve the lives of people affected by dementia. We know many of the carers we support are looking after loved ones with dementia or Alzheimer’s disease, and this may affect you and who you look after in different ways.
What is dementia?
Dementia is a set of symptoms that might include memory loss and difficulties with thinking, problem-solving or language.
Dementia is caused when the brain is damaged by disease. Many of these diseases are associated with an abnormal build-up of proteins in the brain. This build-up then causes nerve cells to function less well and ultimately die. As the nerve cells die, different areas of the brain shrink. The most common cause of dementia is Alzheimer’s disease, but this is not the only cause. Others causes may be vascular dementia, dementia with Lewy bodies or frontotemporal dementia.
How might it affect the person I am caring for?
The specific symptoms that someone with dementia experiences will depend on the parts of the brain that are damaged and the disease that is causing the dementia. Some of the common sorts of problems they might have is:
- Poorer day-to-day memory – difficulty recalling events that happened recently, or asking questions repeatedly that have already been answered.
- Difficulty concentrating, planning or organising – unable to make decisions or find it hard to problem solve or carrying out a sequence of things to complete a task.
- Difficulties with language – finding it hard to follow a conversation or not being able to think of the right word for something.
- Poorer visuospatial skills – problems judging and seeing objects in three dimensions.
- Feeling disorientated – losing track of the day or date, or becoming confused about where they are.
Coping with these changes as a carer
It can be difficult to see a loved one struggle to remember, or change from the person you knew. Dementia can affect their behaviour and mood and this can be difficult to cope with. For instance, they may become frustrated or irritable, apathetic or withdrawn, anxious, easily upset or unusually sad. With some types of dementia, the person may see things that are not really there or strongly believe delusions that are not true.
It can be helpful to read up on the type of dementia the person you care for has, so you can understand better what is going on. This can also make it easier to ask questions and get support from your doctor.
If you are struggling with changes in behaviour, Alzheimer’s Society has some great resources for coping and managing challenging, difficult or upsetting behaviour in someone with dementia. You can read more on the Alzheimer’s Society website.
Some key things to think about to helping manage these symptoms may be:
- A regular schedule or daily routine
- Doing activities together and talking to them as much as you can
- Arranging activities that they like or used to like
- Try not to argue even when they beliefs or thoughts are not true, this can become more distressing for both of you
- Keep familiar or sentimental items nearby so they can be used as a means of comfort
What activities are available?
Music for the Mind: Music is a powerful connector that helps people with dementia communicate, express feelings and share moments of joy, poignancy and remembrance together with others. It appears to ‘unlock’ parts of the brain, allowing people to retain song words and melodies longer than other memories, and this is what Alzheimer’s Support builds on at their 10 Music for the Mind groups in Wiltshire.
Art groups: Creating art can be therapeutic in all stages of life and is particularly helpful for people living with dementia. Alzheimer’s Support run art groups to support people to retain skills and are also suitable for those with no artistic experience.
Carer Cafes and workshops: Take some time for yourself and come along to our virtual carer cafes, workshops, and events to have a chat with other carers, share tips and get support. Find out what’s on here.
Looking after yourself
Although, you are not the person experiencing dementia it can have a huge impact on you as a carer. You might know the person you care for is behaving in certain ways because of the dementia but even so it can still be challenging to deal with and take a huge emotional toll.
It’s important to have a space to talk about these changes and the effects it is having on you. This might be with a friend of relative. If you feel like you don’t have anyone to share this with you could register for our talk and support service which matches you with a trained volunteer for a regular chat. To register call us on 0800 181 4118 or email firstname.lastname@example.org.
It can also be useful to write out how you are feeling or what has been happening. This could also be done as a support service, such as emailing the Samaritans on email@example.com.