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 because of it, rather it is about your ability to manage despite difficulties.
Do other things which 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.
“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.”
Research opportunities for carers
Research is more than trials of new drugs. There are many research programs that provide opportunities for carers.
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 at the NHMRC.
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.
When emotional resilience is not enough
There are some situations where emotional resilience is not enough. Certain types of dementia where the person has a more pronounced change in personality, long-standing difficulties in a partnership or marriage, a relationship affected by drug or alcohol dependency or mental health issues, second marriages later in life, or isolation from support systems are situations that make caring incredibly difficult.
Discussing these issues with your doctor and asking for referral to specialist counselling can help you make decisions in the best interest for both you and the person with dementia. For more information read 2.4 Plan to prevent depression.