Caring for someone with young-onset dementia brings emotional challenges. It’s easy to lose sight of your own identity and feel like ‘being a carer’ is all you are. This can sometimes lead to resentment or frustration towards the person you support.
Building emotional resilience helps you manage difficulties, adapt to change, and find moments of joy or purpose, even when things are hard. It doesn’t mean you won’t feel sadness, anger, or frustration about the changes dementia brings. It means having ways to steady yourself and recover when things feel overwhelming.
Seeing a psychologist or counsellor can help you navigate these feelings. Seeking support early, before the demands of caring become too great, can be a preventative and empowering step.
Here are some ideas to help you work towards building emotional resilience.
Do things which give your life meaning
Keep doing a variety of things that are important to you. Caring can take up much of your time, but maintaining your own identity and interests is vital for your wellbeing.
Use the My Life Plan worksheet to identify what gives your life purpose and how to include those things in your week.
“Between my husband’s appointments and my kids’ activities, I’d let go of everything that felt like me. My sister pointed out that I hadn’t been to my Greek community committee meetings for months. I arranged a bit more support for Peter and went back. Doing something I loved gave me energy for everything else.”
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.
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 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 4.7 Be socially active for ideas and contacts.
Join the Australia Young-Onset Dementia Special Interest Group
This group is a national network committed to research, policy development and clinical care that can improve the lives of people living with young-onset dementia and their families.
Find purpose through contribution
Being involved in research and advocacy can give meaning to your experience. 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
Become a dementia advocate
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 2.3 When feeling threaten to overwhelm you
Build emotional resilience
- Jot down one or two ideas from this article to build emotional resilience that appeal to you and try them out.
- Click on the links to research studies and interest groups and explore the range of activities and research that you can become part of.
