Caring for a parent with dementia
If you parent develops dementia as they get older it can be difficult to know what to do for the best. If it is a slow decline in their mental ability, then it can creep up on you and you can find yourself taking on more caring responsibilities a bit at a time. Or, if you don’t see them often because you live away from each other, then the change might come as a shock to you and it can be overwhelming to try and figure out the best course of action.
1. Respect them
Just because a parent develops dementia and needs more help, doesn’t stop them from being a parent. You should still show them the respect that they deserve and help them to maintain a sense of independence. This means allowing them privacy when they need it, supporting them to carry out everyday tasks, rather than simply doing it for them, and listening to them when they speak.
2. Expect your relationship to change
When your parent gets ill, it can be very difficult to accept, especially if you have a close relationship and you have relied on them for support and advice. As the illness progresses, you might find that your roles start to reverse and you have to be the one offering the support. It is not uncommon to feel like you have lost a parent, so it is important to take some time to grieve and adapt to the changes.
3. Look after yourself
If you are doing much of the care and support yourself, then you must remember to take care of your own needs as well as those of your parent. If you are juggling your own children with work and caring, then you need to ensure that you give yourself a little time to yourself to relax and do something that you enjoy, such as exercising, cooking or just watching a film. You might have a sense of guilt taking time for yourself, but it’s important to stay fit and healthy to be able to provide the best support to your family.
4. Speak to your local authority
As dementia can progress over time, you might not realise how much time you spend as a carer for your parent. You take on extra little tasks here and there, but it can soon build up. If your parent’s needs have escalated, then talk to your local authority and ask for a care needs assessment. They are obliged to do the assessment and deliver the results of whether your parent is eligible for local authority help and funding. Even a small amount of funding could give you extra support and services to take some of the tasks off of you.
5. Hire a paid carer
If you get funding from your local authority in the form of a personal budget, or you have your own money/your parent’s money that you could put towards care costs, then one option is to hire a paid carer. By using a paid carer, you can help your parent to stay at home and remain more independent. You can either contract with a paid carer who is self-employed or works through an agency, or you can hire a paid carer directly. Make sure that the person who is going to be coming in to your parent’s home and caring for them has experience with dementia.
6. Think about residential care
If it gets to the point that your parent is unable to stay at home, then you might have to look at a care home. There has been a lot of bad press regarding care homes, but remember that it is only ever the negative experiences that make the news. There are plenty of good, high-quality care homes that will support your parent and ensure that they are well looked after and stimulated. Do your research, visit the homes as many times as you need to and ask lots of questions before committing to a care home.
7. Plan activities
When a person develops dementia, then it can be difficult to know what kinds of activities to do with them, either at home or when you are visiting them in a care home. Mental stimulus is important, even if they are unable to do some of the things that they used to enjoy. Long-term memories are often the least affected, so talking about the past or looking at photos and items from their youth can be a good pastime. Activity Based Care (ABC) is a system used by Care UK, and this is based on the principle of using activities to help a person with dementia. You can find out more about this here.
8. Prepare for a return from hospital
If your parent has to be admitted to hospital, then you might find that their condition has changed from when they went in and they may have additional needs. As part of their discharge plan from hospital, there should be considerations of what continuing care they need at home, and whether they are able to return home or whether a residential setting or moving in with a relative is a better option. The Alzheimer’s Society has a good factsheet on Hospital Discharge, which is worth a read if you are in this position.
9. Talk to someone
You don’t have to go through this alone, and there are lots or dedicated organisations that offer tailored help and advice, as well as people to talk to. Here are just a couple:
Alzheimer’s Society - www.alzheimers.org.uk
Dementia UK - www.dementiauk.org