When you’re a carer for a spouse, partner or elder relative with dementia, looking after your own wellbeing too is vital – but the pandemic might be making that extremely tough for many people offering dementia care right now.
Dementia care
Even when you dearly love the person you’re caring for, as thousands of carers across the UK and Ireland will know, it’s a demanding role, both practically and mentally.
Those precious pockets of respite – even if it’s just a few hours to yourself once or twice a week to switch off, tinker in the shed, or stretch your limbs – make a world of difference, ensuring you can recharge and aren’t trying to pour from an empty cup.
Charities such as Dementia UK and Carers UK have seen a rise in calls from carers worried about what the coronavirus situation means. There’s lots of advice out there, and you’re not alone.
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Access to respite might be on hold
Carers who were benefiting from community services and outside support, or who could make time for themselves thanks to friends and family helping out, may find all these things are impossible now. The majority of people living with dementia, and their spousal carers, will also be in the over-70s group and may be feeling very isolated. On top of this, the uncertainty and changes as a result of the coronavirus pandemic may be very stressful and confusing for people with dementia.
“Families with dementia may feel particularly vulnerable and challenged by the evolving situation and the confinement measures now in place. Normal support networks such as carer groups, day centres and activities have shut down. Friends and other relatives are being advised not to visit,” says Dr Hilda Hayo, CEO and chief admiral nurse at Dementia UK.
“For many family carers, this means they will get no respite at all – and caring for someone with dementia can be a physically and emotionally challenging, 24-hour-a-day job. The person with dementia may experience increased agitation and confusion, as their routines change,” she adds.
Christine Casely, media manager at Carers UK, agrees the “lack of respite is going to be a huge concern for people – just to be able to recharge their batteries. We totally recognise that carers are going to be under a lot of stress and at risk of burnout without those services.”
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Providing dementia care during coronavirus
We’re all having to adapt right now, and this includes finding new ways to look after our wellbeing. This can be especially hard for people with dementia or other forms of cognitive decline and major mental health needs, and in turn their carers too.
First and foremost, we all need to go easy on ourselves and each other, as this is a challenging time. Take it one day at a time and where you can, focus on the small things that are in your power.
Many charities have created coronavirus advice pages on their websites (details are at the end of this article). These include tips on looking after your wellbeing and where to turn for help and support if needed.
Make a plan and remember that carer support is out there
“One big worry for this group is what happens if either of you comes down with the virus and there’s no one else to help – not everyone does have a close friend or family member they could call on,” says Casely. If there is already a key worker familiar with your situation, get in touch with them to chat it through.
Alternatively, Casely suggests getting in touch with your local council, who will be coordinating support for vulnerable people needing assistance. Hopefully, it won’t come to it – but it can really help to know that you have a plan in place should you need extra help at any point. If you can’t find the phone number you need, call a friend or relative who’ll be able to look it up on the internet for you.
Running out of food and prescription medicines may be a concern too when providing dementia care. These are things you can talk to your local council about. There are lots of schemes in place, which the council, charities and community mutual aid groups are coordinating, to ensure you get the help you need.
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Keep connected with family and friends
“We’re really encouraging carers to reach out to friends and family,” says Casely. “Often carers do think they need to take everything on, on their own, but where they do have friends and family who could possibly help support them – who they can speak with over the phone, or video calls like we are all doing now – that’s a really good idea.”
Hayo agrees keeping in touch is vital. Not only does it help you feel less alone, but scheduling some regular calls and chats helps structure the day and gives you “something to look forward to”.
Try to establish a dementia care routine
Try to “establish a routine where possible. That can really help you feel in control and that you are covering the bases you need to,” says Casely. Keeping your home – especially areas like kitchen surfaces – clean is important, as well as remembering to let some fresh air in to keep the place ventilated.
But routine isn’t just about practical tasks. Think of it as a chance to keep your minds healthy too, even injecting some fun. “Make time in your day for you, where you can do an activity you enjoy, whether that’s reading, cooking or painting, whatever your hobby of choice is, make sure you do that,” says Casely.
Go for stress-busting activities
Sometimes all we want to do is sit and watch TV – and that’s OK! But it’s a good idea to mix it up, as there are lots of activities that can be very calming and rewarding.
For example, music is often used as therapy for people with dementia as it can have profound benefits. Some calming classical music, or fun nostalgic tunes, might go down a treat.
Keeping physically active will help keep stress levels down too. If you can’t get out for a walk, make use of your garden if you have one, or any space indoors to get some exercise in.
Hayo says: “The best thing you can do for you both is to stay calm, stay active and stay entertained. Set up different areas around the house to watch favourite films, listen to music, do jigsaws, and perhaps follow yoga or aerobics videos from the internet.”
Switch off from the news
“It’s important to be informed about the latest advice, but if it’s making you feel anxious, turn off the news,” says Hayo.
Casely agrees: “If you’re sat at home and you’ve got the news on 24/7 it can get very overwhelming. So maybe get one news update a day, just so you know what’s going on, but don’t let yourself get overwhelmed.”
Useful websites and helplines:
If you are concerned or need advice, here are some websites and helplines that may be useful:
Dementia UK: dementiauk.org, 0800 888 6678 (helpline open 9am-9pm Mon-Fri, and 9am-5pm on weekends)
AgeUK: ageuk.org.uk, 0800 055 6112 (helpline open 8am-7pm daily)
Carers UK: carersuk.org, 0808 808 7777 (helpline open Mon-Tues, 10am – 4pm)
The Alzheimer Society of Ireland: alzheimer.ie, 1800 341 341 (helpline open 10am-5pm Mon-Fri, and 10am-4pm Sat)
Family Carers Ireland: familycarers.ie, 1800 240724 (helpline open 9am-8pm Mon-Fri, and 10am-midday Sat)
