How to safeguard your own mental health and find support when caring for someone with dementia

Looking after your mental health and wellbeing as a carer is incredibly important. Caring for someone with dementia or Alzheimer's can be a daily challenge, which is why you need to know how to look after yourself in the process, too. There is dementia carer support out there—and it's important to remember you're not alone. 

"It’s almost like a bereavement," says lead psychiatrist Dr Arghya Sarkhel. "You’re losing your near and dear ones, and yet they are fully conscious and can talk, even if they don’t make sense at times." With the number of ‘sandwich carers’—caregivers for aging parents, but still with their own children reliant on them—on the rise, it can be tricky to find a balance as your loved one progresses through the stages of Alzheimer's or dementia.

In the US, there are an estimated 5 million people with dementia according to research from the Centres for Disease Control and Prevention, which is projected to be nearly 14 million by 2060. There are currently around 850,000 people with dementia in the UK—and this is projected to rise to 1.6 million by 2040, according to statistics from the Alzheimer's Society. And alongside many of these millions of people worldwide coping with dementia, are those who are caring for them during this difficult time. 

Why can being a carer be emotionally taxing?

"It’s natural, but often unwarranted, to feel a sense of guilt," says Kelly Feehan, service director at Chartered Accountants Benevolent Association. It can become more challenging if you're caring for a partner and the balance of your relationship shifts. 

"A person caring for a partner is also likely to feel tired and drained both physically and emotionally, and even helpless as they really need to monitor all aspects of the patient’s daily living. This is extremely hard for anyone to do, even professional carers," says Dr Sarkhel. 

If you're in this situation, however, it's important you look after yourself, too, so you can cope with the inevitable challenges that come your way and be there for your loved one. Here are five simple ways you can care for yourself while caring for others.

5 ways to take care of yourself when caring for others

1. Block out 'me-time'

As hard as it might seem, you need to look after yourself. "Taking regular time out, without apologizing, will help build your resilience," says Feehan. "Start to build new healthy habits, even if it is just 10 minutes, without questioning whether you should be doing something else. For example, try to enjoy a few pages of your book before bed, or take a bath every Sunday. 

"You can also turn everyday chores into 'me time', such as watching an episode of your favorite series when washing up, or listening to a podcast when driving. Find a way to combine your to-do list with the things that you’ve been missing out on. Build these habits into your day or week, so you eventually do it without even thinking."

If you need some ideas of what to do during 'me time', why not try yoga for beginners or incorporate a bedtime yoga practice into your nightly routine? Or, you could take up one of the most popular hobbies for women, such as knitting, jewelry making, or gardening. 

2. Don’t wait to reach out

Feeling lonely is common. "Your heavy load can sometimes be overwhelming and even lead to isolation at times,’ says Feehan. So it’s little surprise Alzheimer’s Research UK found in a recent study 63.5% of caregivers say they have no or not enough support. But don’t wait until things progress before seeking help.

"Ask for help, even at the earlier stages of the disease," says Dr Sarkhel. "Getting someone into various clubs or day centers can make a huge difference to the week." And don’t be shy about talking to a professional. "I usually start my patients with psychoeducation—informing them about what to expect, how the illness is going to progress, and reassuring that support is available at every stage. Being transparent can help with long-term planning."

3. Think about your finances

Perhaps one of the toughest elements of being a carer is dealing with finances. "Not only do you have to deal with personal dilemmas, but you have to manage the pressures of supporting a dependant, financially," says Feehan. Research by Carers UK found 21% of UK carers are in or have been in debt as a result of caring and just 46% of UK carers can afford their bills without struggling financially. This is because, unlike patients with heart disease or cancer who are treated on the NHS in the UK, unless they have assets of less than £23,250, those with dementia have to self-fund their own care. 

If you are looking after someone for 35 hours a week you may be eligible for Carer’s Allowance in the UK, which is £67.60 per week, although there are exclusions, including not earning above £128 a week (after deductions). Visit Carers UK for more information. According to Alzheimer's Association, in the US Medicare or private health care companies may cover some medical expenses for those with dementia. There are also government programs that can help provide income support for those who are eligible. Check your insurance policy or see Alzheimer's Association website for more information. 

4. Consider smart technology

While nothing can replace human contact, installing smart devices in the home may mean a carer has more peace of mind, or could even return to work. "Technology can help to relieve the pressure on carers, improving their quality of life and enabling them to care for longer," says Gavin Bashar from Tunstall Healthcare. "Telecare systems can help manage events such as falls, fires in the home or medication management." 

These personal alarms allow your loved one to call for help if there's a problem at home. They can be worn by your loved one, and many will be set up to notify via your smartphone if your loved one needs help. Other devices that might be useful include watches with GPS tracking, smart doorbells that allow family members to check who is ringing their loved one's door, sensor systems that turn off electricity or gas mains if needed, and devices to remind them to take medicine. 

5. Prepare for the next step

There is interesting ongoing research into a cure for Alzheimer's. However, there is currently no treatment for the disease or its symptoms. A time might come when caring at home is no longer viable, which can be very emotional for the carer. "People often think they could or should have done more," says Dr Sarkhel. "They’ll feel profound sadness, helplessness, and guilt." Because of this, you need to consider options carefully. 

"Don’t act in a crisis," urges Dr Valentine-Bunce, general manager at Chelsea Court Place. "Moving a loved one into a care home is a stressful event for all parties involved. There never seems to be the right time, however, making the move in a time of crisis, such as poor health, a medical emergency, or sudden disease deterioration is most commonly the worst time. Visit care homes and assess your options to ensure the transition, if and when it comes, is as smooth as possible."

Where to find dementia carer support

There are various organizations out there that can help offer both practical advice and tips on caring for yourself and your loved one when negotiating dementia or Alzheimer's, as well as opportunities to connect with others in the same position. You'll find advice on community groups, fundraising challenges, and educational materials—as well as contact details if you need to talk to someone about your situation on the phone. 

In the United States

• Alzheimer's Association 
• Alzheimer's Foundation of America
• Lewy Body Dementia Association
• Alzheimer's Family Centre

In the United Kingdom

• Alzheimer's Society
• NHS
• Alzheimer's Research UK
• Carers UK

woman&home thanks lead psychiatrist Dr Arghya Sarkhel, Kelly Feehan, service director at Chartered Accountants Benevolent Association, Gavin Bashar from Tunstall Healthcare, and Dr Valentine-Bunce, general manager at Chelsea Court Place for their time and expertise.