It can be very distressing when a loved one develops dementia – a condition which affects around 850,000 people in the UK (with rates on the rise). And often, when a close relative, spouse or partner or even a good friend is diagnosed with dementia, this also means stepping into the role of being a carer.
It’s estimated there are currently around 670,000 dementia carers in the UK, playing a vital role supporting those diagnosed with the disease, which causes symptoms like memory loss and difficulties with problem-solving, thought and language, as well as personality changes and trouble carrying out day-to-day tasks.
But being a carer can be incredibly challenging too, and it’s entirely normal to sometimes find it a struggle – which is why it’s so important to be aware that support is out there for carers too.
National Dementia Carer’s Day, co-founded by the likes of Dementia UK, Alzheimer’s Society and SweetTree Home Care Services, aims to highlight and celebrate dementia carers, and shine a light on what it really means to be a carer.
Christina Macdonald, content director for leading brain and mind clinic Re:Cognition Health, whose mother had vascular dementia, knows from personal experience what caring for somebody with the condition can entail.
Ahead of this year’s National Dementia Carer’s Day on September 11, she shares her top 10 tips for dementia carers…
1. Enlist a support crew
“You can’t do it on your ow,n so enlist the support of trusted friends, family and neighbours and accept help when it is offered, even if you think you won’t need it straight away.”
2. Knowledge is power
“Speak to professional organisations for advice and support – your local authority, Alzheimer’s Society, Age UK, Dementia UK, Carers UK, and visit online resources including The Alzheimer’s Show website – and do your research on local support and funding available. More information on these can be found in Christina Macdonald’s new book, Dementia Care: A Guide.”
3. Mentally detach yourself when you need to
“It’s important to remember that dementia is a disease of the brain, so a person with dementia could be susceptible to sudden and unpredictable mood swings, often without warning. It is the disease talking, not the individual, and because they can’t change their behaviour, you need to learn to detach yourself from the situation. Give them some space to calm down if need be.”
4. Be in a good place when you visit
“A person with dementia can be happy one minute and angry the next. As moods can be erratic, be prepared for all situations when you visit (if you don’t live with the person you’re a carer for). If you are tired, stressed or not in a good place, it will not benefit either person.”
5. Exercise regularly
“The endorphins released when exercising are mood enhancing. Exercising with the person you are caring for will benefit you both, helping to clear the mind and help reduce symptoms of sundowning (when a person with dementia can be susceptible to mood swings late afternoon or early evening when the sun goes down).”
6. Distract and deflect
“Don’t talk about bereavements – even though they may have happened a very long time ago, they can be perceived as news to the person and trigger episodes of grief. When you can, change the subject when asked about where a deceased person is – you may find it’s a brief moment that you can move on from very quickly.”
7. Encourage the person to socialise
“Social interaction will make a difference to the person’s mood and mental awareness. Encourage the person to get involved in activities or mix with others as mental stimulation helps. Know when to back off if they don’t want to do something and don’t forget to mix yourself – befriending other carers is an excellent opportunity to vent, share and support, or having a coffee with those unaffected by dementia will give you a chance to switch off from your caring duties.”
8. Establish a routine
“A regular routine and familiar environment will make the person feel secure. If you are planning a day trip, find a favourite place where the person feels comfortable or associates with happy memories.”
9. Prepare for the future
“The time will come when the person with dementia can no longer be left alone, so it’s advisable to start planning, preparing and thinking about the future as soon as possible. Make sure paperwork is in order, organise Lasting Power of Attorneys for Property & Finance and Health & Welfare, notify the DVLA of the person’s dementia diagnosis and locate important documents you may need to manage in future such as bank statements and bills.”
10. Look after yourself
“A healthy carer makes a good carer; you can’t look after someone else if you don’t take care of yourself. Take time out, have regular daily breaks and short holidays away when you need them.”
Do you care for somebody with dementia? Tell us about your own experiences below.