Many people with dementia will experience memory problems as well as issues with reasoning and other thinking skills. They can find it hard to plan and make decisions. People with dementia can also experience behavioural and emotional changes including low mood and anxiety. In severe cases, they can become easily confused, experience hallucinations, and develop problems walking, speaking, and swallowing.
Everyday tasks can therefore be difficult for them to do alone, and many people with dementia end up needing some additional care.
Although caring for someone with dementia can be very rewarding, it can also be challenging too. It can place a lot of physical and emotional demands on you.
Some carers say they appreciate the chance to spend more time with their friend or family member. But it can also be heart-breaking to watch someone you love change in so many ways.
To help you with your caring role, we have provided advice and guidance on a range of relevant topics.
It can be common for people to diagnose themselves, or someone else, with dementia or Alzheimer’s Disease, rather than seeking an official diagnosis from a doctor. Some people don’t want to confront the problem. Others think there is nothing that can be done or that symptoms such as memory loss are just a normal part of getting older.
It is crucial, however, to seek medical advice as soon as you suspect there is an issue. Memory problems are not always caused by Alzheimer’s Disease and a GP will be able to investigate the cause further. Even if Alzheimer’s is the cause, the earlier that it is diagnosed, the more likely it is that treatments will be able to help. Plus, an official diagnosis is often needed to access financial support and other services.
If you are concerned about a friend or family member, encourage them to make an appointment with their GP. You could offer to go along with them too. This will not only provide them with support but will also allow you to talk to the GP yourself about the changes you have seen. This can often help them to make a diagnosis.
If you would like further information on accessing a diagnosis and what to expect, please see our article ‘Dementia- getting a diagnosis for someone you care about’ and our short article on ‘Top five things for carers to know about dementia’.
At first, you might find your friend or relative is able to carry on with their everyday tasks as usual. As their condition progresses, however, they may need help with more and more things.
They may not always be aware when they need more support. Or they might find it difficult to ask for help. Sometimes their dementia may affect their communication skills making it difficult for them to get their point across.
You could try noticing for yourself which tasks they can and can’t do alone. Try to look out for more subtle ways they might communicate their needs. For example, fidgeting or standing up and down a lot could be a sign they need the toilet.
It can be tempting to just step in and do the tasks they are struggling with for them. But it is better to support them to do those tasks themselves as much as they can. This not only keeps up their skills but can also help their self-esteem.
Sometimes people with dementia are physically capable of completing everyday tasks but simply forget they need to be done. You can therefore help them to stay independent by introducing memory aids. For example, if you find they regularly forget to switch off the TV, try sticking a note on the lounge door to remind them. It is worth experimenting with different formats and locations for these aids to see what works best for them.
It can also help to introduce a consistent daily routine. This could include everything from when to eat meals to when to use the toilet. It can help to include visual reminders of this routine too. If times are scheduled in, make sure there are plenty of clocks visible.
For more specific advice about everyday tasks that you might need to help with, take a look at our guides ‘What is dementia and its impact on the daily life of a carer’ and, 'Helping someone with everyday tasks'. If you are caring for an older person, you may also find the guide 'Caring for someone who is frail and elderly' useful too.
Alongside the normal, day-to-day events, you will occasionally encounter things that are out of the ordinary. Although these are not always easy to plan for, it can still help to learn more in advance so that you feel prepared. This will help you to stay calm and feel in control in what can sometimes be a very stressful situation. Take a look at our 'Planning for emergencies as a carer' guide for more information.
One out-of-the-ordinary event could be the person you care for needing to spend some time in hospital. This could be a planned visit or it could come out of the blue, for instance if they have a fall. Our guide 'Caring for someone coming out of hospital' covers everything you should know about their transition home after a hospital stay and ‘understanding the Herbert protocol’.
It is very common to worry about the financial implications of looking after someone, and it can be confusing to understand what support is available and how you can access it. The good news is we have got a full and comprehensive overview of everything from benefits to grants in our help and advice section.
Caring for someone with dementia can be a big responsibility, but many people are still able to combine this role with paid external work. If you want to do both, take a look at our guide 'Working when you are caring' for advice on how to manage this balance successfully.
Caring for someone with dementia can significantly affect your relationship with them. You may be used to just being their partner, son, daughter, sibling, grandchild or friend. You could be more used to them looking after you, rather than the other way around. Becoming their carer can therefore be a big adjustment for you both.
Sometimes caring for someone with dementia can improve your relationship with them. Some carers find they become closer with their friend or family member through spending more time with them. Others report that the seriousness of a dementia diagnosis allowed them to put small grievances behind them. However, it can also put new strains on your relationship too.
Alongside this, becoming a carer can also have an impact on all of the other relationships in your life as well, both positively and negatively.
For advice and support on ways to manage these changes, take a look at our guides ‘Dementia – talking to friends and family’ and, 'How your relationships can change when you become a carer'.
As a carer it is common to prioritise the person you care for’s needs over your own. But it is vital that you make sure you also look after yourself. Not only are your own needs important, you also need to stay well so that you can keep looking after your friend or family member. Take a look at our 'Looking after yourself as a carer' guide for advice on how to keep yourself well.
Caring for someone living with dementia course
The Caring for someone living with dementia course is a three week programme which is designed to offer carers tailored information and resources relevant to their caring situation. Developed with and for carers, this programme will give carers the tools to be more resourceful in their caring role, improve or maintain their wellbeing and increase their confidence in navigating the support and services available.
This course is open to any carer who supports someone with dementia. The format of the sessions allows carers to connect with a small group of others in a similar caring situation, ask questions and learn through conversations and shared experiences. Places on each programme are limited, but Carers First will be running this course regularly throughout the year, both online and out in the community.
This 1.5 hour session explores what caring for someone living with dementia can look like and the support available for carers during and after a diagnosis.
Session topics include:
- What we mean by dementia including the types and stages of dementia.
- What health and social care or community support exists.
- Introduction to our Caring for Someone living with dementia checklist.
As part of this 1.5 hour session, carers will be given the tools and encouragement to be able to talk with family, friends, and neighbours about dementia. It will explore positive communication strategies and managing behaviour that is challenging.
Session topics include:
- How to talk to family and friends about a diagnosis.
- Supporting changes in behaviour.
- Maintaining human connection.
This 1.5 hour session offers carers insight and knowledge on how to keep someone safe at home and what support is available to support that. It includes information on how carers can manage changes, plan for the future and access support when it happens.
Session topics include:
- Ways to keep someone safe at home and maintain their independence.
- What to do when things change.
- Thinking about and planning for the future.
Dementia Checklist for carers
Whether you’ve been looking after someone with dementia for a while or someone you know has recently received a diagnosis, it’s a lot to take in and you may not know where to start. We have created this checklist with carers and our Carers First teams to help care for someone with dementia.
