Dementia presents many challenges for carers. It is essential to be able to ‘bounce back’ from challenges and difficult experiences, or over the long term your mental health will suffer. Another way of describing ‘bouncing back’ is emotional resilience.
Having emotional resilience doesn’t mean you won’t feel upset about dementia or changes in the person you care for because of it, rather it is about your ability to manage despite difficulties and adapt to situations as they arise.
Emotional resilience has been compared to a muscle that you need to build over time. This website emphasises the need to care for yourself through exercise, eating and resting well, prioritising self-care and taking regular breaks.
Building emotional resilience
Keep doing things that give your life meaning
Ensure that caring doesn’t ‘take over’. Keep doing a variety of things which are important to you. See 3.1 Dealing with memory and thinking difficulties for the ‘My life plan worksheet’ on figuring out what is important to you in life and ways to plan to do those things.
Sofia found balancing her time difficult between supporting three lively teenagers and her mother Lydia, who lives by herself in the next suburb. She said:
“One day my husband pointed out I had given up the social support committee at our Greek community centre. I hadn’t had a day out shopping forever and I was too tired to go out to social things if we were asked. So I arranged some additional support for Mum and went back to my committee. I realised that doing things I loved (even though I love doing things for Mum) actually gave me more energy for my family.”
Be kind to yourself
Don’t be overly critical of your abilities. There is no ‘perfect way’ to handle every situation. Some days will be harder than others, and that’s normal. Be patient and gentle with yourself. Remember it is OK to use the word ‘no’ when others ask for your time.
Anna has always been the organiser in her church group. She would organise meal rosters when people were ill and shopping help when people were housebound. After Tony’s diagnosis with Lewy body dementia, she had to learn to say ‘no’ when people asked to her to organise assistance. Anna said “It’s in my nature to help but I had to pull back and explain that Tony needs me more now. I’m happy to cook extra meals but learning to say ‘no’ to the time-consuming organisation was a relief for me. It was also an opportunity to explain what was happening for us and allowed me to start asking for assistance for us”.
Practice self-care to stay balanced
Self-care is an investment in your mental health and helps you move forward. It means putting time and energy into looking after yourself – not just physically, but emotionally and socially too. This might include getting enough rest, going on a short holiday, dressing nicely, or simply doing something just for you.
Practice spirituality or mindfulness
For some, this means prayer or attending a place of worship. For others, it’s connecting with nature, meditating, or taking quiet time alone. Whatever form it takes, nurturing your inner life can strengthen your sense of peace and perspective.
Stay socially connected
Maintaining contact with supportive people protects your mental health. Some friendships deepen, while others fade – after a diagnosis of dementia this is common. If old social networks fall away, consider joining new social or peer support groups where people understand your experience. See 4.8 Be socially active and 4.9 Join a group <Needs internal link> for ideas and contacts.
Find purpose through contribution
Being involved in research and advocacy can give meaning to your experience of dementia. It can be empowering to use your insights to help others or improve treatment and services.
Join a research study
Potential benefits include:
- Access to new treatments or support programs
- Learning more about dementia and coping strategies
- Contributing to research that may help others
How to get involved:
- Ask your doctor
- Volunteer through Step Up for Dementia Research or the Australian Dementia Network (ADNet)
- Explore current research opportunities via Dementia Australia
After a research interview, one carer said “This interview has been really helpful. It has allowed me to think about my situation and get some perspective on it”.
Being involved in research sometimes helps you get more information about dementia and opportunity for interventions. Many carers have told us that being involved in research is one way to help make sense of a diagnosis of dementia in a loved one.
If you’re particularly interested in research, you can do more than participate. You can become an advisor, consultant or co-researcher. Learn more through the National Health and Medical Research Council’s booklet ‘Becoming involved in Research: A guide for people living with dementia, their care partners and family members.
Become a dementia advocate
Dementia advocates are people who represent and speak for those living with dementia and their carers. Dementia advocates give their time in a variety of ways. They:
- Share their views and experiences about dementia and caring.
- Provide feedback on new programs or policies which might affect people with dementia and carers.
- Speak publicly about their experiences with dementia or sit on a committee representing the interests of people with dementia and carers.
You might be able to volunteer to become an advocate as part of your local healthcare or aged care service – make it known to the clinician or service manager that you’re interested in helping to improve the service. Advocacy is something you can participate in yourself, support your person with or do together.
If you are interested in becoming a dementia advocate, consider the following:
- Dementia Australia dementia advocates program.
- Dementia Alliance International.
- YouTube video about people with dementia’s experiences as advocates.
- YouTube video about carers’ experiences as advocates.
Advocates share their experiences to help improve dementia awareness, programs, and policies. This can be done by:
- Providing feedback to services or committees
- Speaking at community or professional events
- Representing carers or people living with dementia in advisory roles
Find out more through:
When emotional resilience isn’t enough
Some circumstances, such as major personality changes in the person living with dementia, major psychiatric symptoms associated with dementia, relationship strain, second marriages or partnerships, or lack of support, can make coping especially hard. If you’re feeling constantly exhausted, anxious, or hopeless, talk to your GP. Ask about counselling or specialist support. Getting help is a sign of strength, not failure. For more information, see 2.4 Plan to prevent depression.
Build your emotional resilience
- Read through the ideas on this page. Choose one or more ways you could help your own emotional resilience.
- Sign up for research. Join a research study that appeals to you, for you or the person you support.
- Consider becoming a dementia advocate.
- Remember, getting help if things become too much is a sign of strength.
