4.3 Look after your emotional and mental health

Build your emotional resilience

Carers of people with dementia often face challenges. Being able to ‘bounce back’ from difficult experiences can help you to protect your mental health.  Another way of describing ‘bouncing back’ is emotional resilience.  Having emotional resilience doesn’t mean that you won’t feel upset about dementia or things that change because of it, but that you will be able to manage despite difficulties. You can build up your emotional resilience.  Based on their experiences, other carers share the following tips to help you build and maintain your resilience:

Do things which have meaning and purpose for you

Make sure that caring doesn’t ‘take over’. Keep doing a variety of things which are important to you. See Talking about dementia for a worksheet to help you work 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 county. She told us, “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. I was able to arrange 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.”

Join dementia research studies

Research is more than studies of new drugs. There are many projects that have 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 such as educational courses or extra support. Many carers have told us that being involved in research is one way to help make sense of a diagnosis of dementia in a person you care for.  Volunteers share their stories about taking part in dementia research .

Watch this video to find out why and how to volunteer to take part in research. 

To sign up for research

• Register your interest in taking part in research by signing up to hear about opportunities  
• Volunteer through organisations such as the Alzheimer’s Society. You can join the research network or sign up for different studies.

Become a dementia advocate

If you’re particularly interested in research, you can do more than participate.

Dementia advocates are people who represent and speak for others living with dementia and carers.  Dementia advocates give their time in a variety of ways. They may:

• Share their views and experiences about dementia and caring
• Promote the rights of people living with dementia and their carers
• Provide feedback on new programmes 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 NHS trust –make it known to the clinician or service manager that you’re interested in helping to improve the service.

The Alzhiemer’s Society has a booklet of resources to help you become a dementia advocate. 

You may also be able to join advocacy programmes with organisations such as Age UK.

You can also join advocacy groups which are set up by people living with dementia and carers.  There are national and local organisations such as Dementia Action Alliance (DAA).   

You can also join international advocacy networks such as through Dementia Alliance International.

To get a better idea about what people experience through being an advocate, this short video provides insight of people with dementia:

and this video experiences of carers: 

Advocacy is something you can participate in yourself, support your person with or do together.

When Emotional resilience is not enough

Having emotional resilience is important but sometimes this is not enough. For example, coping with symptoms of dementia where the person has a more pronounced change in their personality, long-standing relationship problems 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 which can make caring more difficult to cope with. 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.

Practice self-care

Self-care means putting  time and energy into looking after yourself. This can be small everyday things you do to take care of yourself or special events or occasions.  It might mean going on holiday or getting enough rest, getting your hair done, or doing things just ‘for yourself’. Taking care of yourself can boost your mental health and ability to move forward in supporting someone with dementia. Here are some ways to practice self-care:

Be kind to yourself

Don’t be too hard on yourself.  When you support someone with dementia there is no “right way”.  Carers do what they can. Strategies to support the person that work for one person may not work for you. They may work some days and not others. All carers have bad days and may lose patience or feel down. Don’t beat yourself up, it’s normal. 

Practise your spirituality

Spirituality means different things to different people. For some people, spirituality is about practising their religion.  For others it might be about connecting with nature, the wider world or yourself.  Whatever spirituality means to you, there is evidence that people who belong to a faith community, or practice mindfulness have better mental health.

Here are some ways you might practice spirituality:

• Prayer or worship at home
• Going to a place of worship such as your mosque, temple, synagogue, or church
• Following religious rituals
• Practising meditation or mindfulness
• Spending time outdoors.

Mindfulness and mediation are becoming increasingly popular.   Anyone can do it and it can boost your mood.  Find out more about mindfulness at Age UK. 

There are apps you can use to practice mindfulness and meditation.  Some are free but there may have to pay for some. Headspace is one example. 

Be socially active

Supporting someone with dementia can have a big affect on your social life. Some carers tell us that it has brought them closer to their family, others have found that friends fall away. Keeping in contact with different people and keeping your friendship and family networks is very important for your mental health.  Reach out to friends, even if you’re not usually the person who does organises social events. Ask a close friend or family member to help you connect with other friends and family.  Talking about dementia  provides tips on talking with friends and family about dementia.

it might be helpful to think about meeting new people and building new support and social networks, especially those that will provide a supportive atmosphere. Support groups are a great way to find people who understand your situation. For more information about support groups contact the Alzheimer’s Society to find out about groups for carers in your area.  Age UK can also help you to find local support.

There may also be groups you can attend with the person with dementia if that works better for you.

Your local council may be able to help you find groups, or organisations such as Re-engage may also be able to help.

Self care and resilience

Looking after your mental wellbeing and staying connected with others will help you with your emotional resilience and prevent against feeling lonely and isolated.