My advice for living well with dementia
We asked people living with dementia or mild cognitive impairment to share the advice they would give to support others in a similar situation.
They also shared the best advice they had received for living well with dementia.
Here’s what they told us:
Andree (pictured above):
“The best advice is to be patient, tolerant and forgiving.
“Whether we're a carer, friend or a person living with dementia, we all have moments when we feel it is all too hard but we need to remind ourselves to be thankful.
“Life is all too short, so we need to make the most of every new day. Just be grateful.”
Carolyn and Graham:
“If you have an MCI (mild cognitive impairment) diagnosis or are living with dementia, appreciate that the future is not hopeless – a rewarding and pleasurable life can still lie ahead.
“Participate in the Advocates Program – we’ve found it stimulating and a big morale boost to have our expertise valued.
“Address end-of-life issues – it is your life to lead to the end.”
Steve G:
“When you are diagnosed with dementia you need to have a good sense of humour or find one. You are going to do silly things and you need to be able to laugh at yourself.
“Find a reason to live. You may not be as good at things as you used to be, although you can still do something and still learn things.
“Do not let others tell you because you have dementia you cannot do anything. Live each day and confound them and be useful.”
Ann:
“My husband and I try to live positive lives with dementia. I think that understanding your dementia diagnosis is helpful, as is knowing that you are not alone.
“Being a Dementia Advocate was an excellent way to meet other people living with dementia and families and carers.
“We have met some good friends through these groups.
“Understandably, a dementia diagnosis is not the easiest news to have, however, what helped me was the relatively quick contact my husband and I had with Dementia Australia and seeing what relevant information they could offer us.”
Nell:
“Focus on the things you can do and stay positive. We all have our bad days.
“Surround yourself with supportive people. Educate yourself and others – it often removes the myths and stigma around dementia.”
Paul:
“Once diagnosed put your energies into ways of moving forward, prepare for the inevitable as best you can.
“Don’t waste energy worrying. You’ve got it. Aim to help yourself and mostly help the carer.”
Heather:
“Be ‘out and proud’ with your dementia.
“Why? Because if you are to enlist the support you need for your dementia it is necessary to inform people of those needs.
I regard it as my duty to inform strangers of my condition, in order that the strangers do not suffer shame or embarrassment in their interactions with me.
“For example, the bank teller who suggests I use the ATM in the street; the librarian who insists I find my library card. In five years, I have never suffered discourtesy or been humiliated when I have plainly stated my confusion or dilemma.”
Eileen:
“Your life is not over as you have a lot of living and advocacy to do to end the stigma associated with getting a diagnosis of dementia.”
John:
“With support from others and making adjustments to your daily living routines and modifications to the physical environment you can live well with dementia.
“Having a diagnosis of dementia is not a lifestyle choice, but now that I have dementia I can choose my lifestyle and I choose to live well with dementia.
“People with dementia and their supporters (care partners, family members and friends) do not know what questions to ask upon diagnosis so get in contact with an organisation such as Dementia Australia.
“Try to access a support group as this will provide some valuable access to information and emotional support.
“Being a Dementia Advocate has empowered me to speak up about the issues that impact a person living with dementia.”
Gwenda:
“I would tell any person newly diagnosed with dementia to maintain hope and try and build new neural pathways.
“Also find out the type of dementia you have. Insist your diagnosing doctor refers you for further testing.”
Bill:
“I tell all people with newly diagnosed dementia to get involved with their local Dementia-Friendly Community. It is by far the best place to get advice and ideas relating to living well with dementia.
“The best advice I received came from a podcast featuring Heckle & Jeckle. Just because I’ve lost the right to drive, doesn’t mean I’ve lost the right to drive my life.”
Mithrani:
“Dementia is like cancer – it has different types. There is life after cancer – so is there (life) after dementia.
“We need to advocate as a strong, passionate voice about what is needed in our journey.”
Cecil:
“Undoubtedly, the MCI (mild cognitive impairment) journey is increasingly making the living experience an effort and, on some days, far too often really, a struggle.
“This year's goal is to simply hope for a life of no regrets by intentionally seeking to maintain a balanced life by making wise lifestyle-choices that will accommodate a seemingly ever-changing normality moving forward.”
Kevin:
“My advice would be to explain to family and friends, and don’t hide from the problem.
“You should seek support to obtain knowledge and learn acceptance.”
Graham (living with mild cognitive impairment):
“The best advice I can offer is to follow the recommendations on delaying the full onset of dementia by managing your weight, engaging in physical activities as well as mentally stimulating activities.
“I don’t know whether I’ve been able to stall the onset but I’m doing my best. I recently had another MCI evaluation and have not regressed, so I’m relatively happy.”
Steve R:
“My single most important action taken after my diagnosis was to advise my family and friends. Especially my daughters in relation to the possibility that I had passed on the APOE4 gene.
“If that had applied then they could have become carriers to their children. As it turned out the possibility didn’t eventuate.”
Dennis:
“To paraphrase a Star Trek episode, to all of us living with dementia every day – be brave, be bold, be courageous, be true to yourself and remember, it’s not your fault.”
Robyn R:
“My thoughts to someone diagnosed with dementia is to make appropriate appointments to have all your senses checked with a specialist in that field i.e. sight, hearing, etc.
“Each of the senses send specific messages to our brain and we want our brain to receive the best messages it can for as long as it can.”
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.
