The best advice I’ve received about supporting someone living with dementia
The loved ones of people living with dementia share the most valuable advice they have received to help them in their caring role.
They also share the advice they would give others who care for someone living with dementia.
Here’s what they told us:
Bob (pictured above with his dog Missy):
“The best advice I have been given is: ‘It is a big job. Don’t be proud – seek help as you will need it.’
“My advice (to others) would be to register with care providers as early placements are very hard to get.”
Sophie:
“The key to living well with dementia is to practice these four things – sleep well, eat well, exercise often and maintain relationships by socialising regularly.
“Be patient. Understand that the brain is physically changing and what used to seem ‘easy’ can now be quite a challenge. Allow more time. Provide the space for ‘new’ ways of doing things.
“One of the most incredible strategies that I’ve learnt (from a Dementia Australia Family Engagement Counsellor) is co-regulated breathing. I use this technique regularly to relax and reduce our stress and anxieties. It’s now something I’m starting to do without even realising.”
Patricia:
“The best advice I can offer as a carer is don’t isolate, don’t be scared. Be mindful, involve friends and family. Speak up, put it out there and, most importantly, ask questions.”
Gaye:
“After 62 years of marriage my husband needed more care than I could give him as his dementia worsened and he had to go into care.
“My advice is to see this as 'shared care’. I leave him after visiting, knowing he is safe and cared for and to maintain our relationship I love him as the man he is now, and not the man he was.”
Vivienne:
“The diagnosis of dementia can occur a very long time after those closest to the person know it is happening.
“In my case it was 14 years before my husband's diagnosis. A person with early dementia can seem quite okay to friends and relatives who don't spend much time with them, or don't see them trying to do things that involve, for example, a sequence of steps.
“My advice to people in this situation is to trust your own judgement and don't get upset that others don't believe you.”
Chris and Jack:
“Get connected with those in a similar situation. This can be achieved through Dementia Australia – counsellors, training courses, Memory Lane Cafes, etc.
“Seek out as much information as you can to help understand the journey. The best source we found was the Wicking Dementia (Tasmania university) MOOC course Understanding Dementia, a self-paced online learning program which we completed together. Dementia Australia also offers courses and they are good.”
Jill:
“The best advice I was given was to not take everything personally. As our loved one's condition deteriorates, their personality changes, behaviours that were never displayed, start to emerge. Just remember that it's the disease talking, not the person, so keep them separate.
“Find time for yourself, regardless of what you do. It's easy to lose yourself in day-to-day life as a carer. Just remember, you matter.”
Michelle:
“It's really rewarding to attend, receive assistance and advice from the dementia organisation group and also to meet other dementia colleagues.”
Robyn J:
Advice for people living with dementia: “Make plans now so you get the care you want – do an advance (care) directive and make sure everyone knows about it including health professionals.
“Think of everything you do for yourself now and imagine how that would look if you couldn't do it yourself then spell out how you would want it done for you.”
Claire:
“The best advice was given to us by our geriatrician: ‘The lack of motivation is part of dementia. Nagging the patient is not helpful and the carer must respect (their) wishes to foster a good quality of life.'"
Thank you
Thank you to the Dementia Australia Dementia Advocates who shared their advice for this story.
Click here to find out more about the Dementia Advocates program.
Looking for support or advice?
Contact the National Dementia Helpline for more great advice and support. It is available 24 hours a day, seven days a week, 365 days a year on 1800 100 500 or via our live chat.
The Dementia Australia Library provides free access to a comprehensive collection of print and digital resources about dementia and is available to everyone.
