How to care for someone with dementia without losing yourself

A loved one’s dementia diagnosis is the start of a new journey.

While it’s not a path anyone chooses, it’s important to remember you can still live well – even as your lifestyle and relationship change and adapt.

A person living with dementia can have a good quality of life. Dealing with changes in memory and personality is not easy for the person living with dementia and it’s certainly not easy for their carers. With the right support and outlook, it’s possible to experience laughter, joy and enriching life moments in this new phase.

There’s no one-size-fits-all solution for living well with dementia. Every person experiences dementia differently and what works for one person or family may not be right for you. The suggestions below are here to help you start thinking not just about how to care for your loved one but how to look after yourself as well.

Focus on your own wellbeing

When caring for someone with dementia, it’s easy to get sucked into a vortex of activity, guilt and expectation. You’ll be in a steep learning curve about dementia, working to navigate the care system and dealing with cognitive changes in your loved one. You may feel like there’s no time to eat properly or to rest. Finding time for sport or exercise might seem selfish. Don’t be unrealistic about what you can accomplish.

Dementia is a long game – you’ll be running a marathon, not a sprint. To provide the best possible care, replenish your own physical, emotional and spiritual stores. Skimping on sleep, letting your fitness levels plummet and eating poorly will not be helpful to providing care. Be kind to yourself and consider your own health and fitness as a vital part of providing excellent care.

Keep talking to each other

The way you and your loved one experience their dementia will be very different.

Talk to each other about what you’re experiencing. This way you each have the opportunity to understand where the other is coming from, allowing you to feel acknowledged, and avoid unnecessary frustrations or resentments building up.

Dementia is a progressive condition. You’ll be dealing with a changing personality, so you can’t assume everything you’ve known about the person you’re caring for is going to remain the same. They will almost certainly change their tastes, opinions and maybe even their personal values. Maintaining the conversation, providing reassurance and learning together is going to help both of you cope.

Make sure there are still plenty of leisurely conversations, too. Make jokes, tell funny stories and don’t hesitate to point out silly or ridiculous behaviour in people around you. People with dementia can be closed off from the lighter side of life, but a diagnosis doesn’t mean they’ve lost their sense of humour. A little levity can go a long way to making you both feel better and help establish camaraderie, as well.

Keep friends and family close

Sadly, it’s quite common for people with dementia to become socially isolated. That can mean you, as their carer, also feel cut off from your support network.

Sometimes this happens because the person with dementia withdraws from their social networks, and we need to encourage them to maintain those connections.

Often, however, it happens because family and friends are worried they don’t know how to react to a person with dementia, so they begin to avoid contact.

In that situation the solution starts with demystifying dementia and removing those little hurdles. Reach out to friends and family and help them understand what dementia is, how you’re experiencing it, and how energising it is for you both to see familiar faces.

Whenever possible, continue to include the person you’re caring for in family gatherings and celebrations. Even if it’s only for a short while, make a point of being present. This helps normalise dementia within the family. It also helps family and friends, who may be uncertain what to do, learn from you.

Prepare for change

The person you care for is going to be different. Some changes will be apparent and may happen quickly; others will be slower and less obvious. You may experience phases of behaviour lasting only for a short time. This can be frightening for you and your loved one.

If you embrace the inevitable change occurring, you’re likely to discover many positive opportunities to foster a new or different relationship. The person you love is still there and some things won’t change at all. A lowering of inhibitions is common and you may find your loved one relaxing in ways they hadn’t before. The changes can be fun, and funny, and these new experiences can deepen the relationship for both of you.

Support, don’t disenable

As you see your loved one falter, you may feel inclined to do everything for them. Let them maintain as much independence as they can, for as long as they can. Many people will demand this – and not necessarily in a nice way. It can be detrimental to their self-worth if they feel like you’re trying to encroach on their freedom to make decisions or participate in activities.

Making small provisions can be extremely helpful. If the person you’re caring for has trouble dressing themselves, buy clothes that don’t have buttons or zippers. If they struggle to use a knife and fork, make sure they have food that doesn’t need cutting or can be eaten with a spoon – or even their hands. The satisfaction someone gets from being able to eat a sandwich on their own is valuable to their self-esteem.

There will be times when it seems easier for you to step in, but resist the urge, especially if they don’t ask for help. Provide encouragement and patience as they grapple with new challenges.

Show people what to do

Like anything, dementia can be demystified through experience. Don’t feel like you have to sequester your loved one away. Plan regular outings in places where you both feel safe. Find a quiet café or restaurant nearby and make a regular appearance for coffee or lunch during a slow period. Get to know the staff so they get to know both of you. If necessary, make a visit beforehand on your own and tell them what to expect.

Give regular updates to your family and friends – and the family and friends of your loved one. Tell them what changes to expect and how they can help. Don’t be hesitant to explicitly ask for help. It can be something as small as asking people to join you on a coffee outing, make a favourite food or stop in for a 10-minute visit. The more you prepare the rest of your support network to help you, the less fearful – and more willing – they’ll be to help.

Remember the person experiencing dementia still has a quality of life. They still experience happiness and sadness, joy and sorrow. Their experience is different than it was, and your experience with them is different. It might not be what any of you wanted, but it doesn’t mean you can’t still have a satisfying relationship.

Looking after yourself and enlisting support are critical to your ability to manage the care of a loved one with dementia. Chorus is here not only to help your loved one lead the life they choose but also to support you in your efforts. Listen to Chorus Voices to hear one woman’s experience of caring for her mother who has dementia.