Caring for a family member or friend living with dementia is simultaneously a challenging and incredibly rewarding journey for many. Those taking on this role, often referred to as informal carers,[1] experience huge emotional highs and lows as a result of this hugely demanding role.

It is estimated that there are around 4.9 million informal carers in the UK.1 Informal carers are often the unsung heroes of the social care system, providing unpaid and undervalued work, supporting their loved ones to live better for longer in the community.

There are high levels of stress among informal carers, with nearly a third (30%) informal carers reporting having general stress and nearly half (49%) having experienced an adverse impact on their health due to their caring role.[2]

In particular, informal carers of people living with dementia often experience extremely high levels of stress and burden because of the huge demands of their role.[3] This is exacerbated when they are caring for someone who displays challenging behaviours or has severe cognitive impairments.[4]

This stress can be harmful to the health of the carers, and also increases the likelihood of the care recipient being admitted to a care home.[5]

It was estimated that there were over 880,000 people living with dementia in the UK in 2019, which is expected to rise to over 1.5 million by 2040.[6] Because of this, it is anticipated that the number of informal carers of people living with dementia will increase in the next few decades.

For Alzheimer’s Awareness month, we would like to take the time to show our appreciation for informal carers of people living with dementia and discuss evidence-based ways that they can reduce their stress.

Here are 5 evidence-based ways that you can reduce your stress as an informal carer of people living with dementia.

1. Education

Learning new things is always helpful! Recent research suggests that education is particularly effective in reducing stress among informal carers of people living with dementia.

Recent approaches using education, which have been shown to be effective, have focused on education about health and wellbeing, including physical activity and stress management,[7] developing knowledge and skills around dementia and caregiving[8] and psychological first aid.[9]

Find out what education and information is available to support informal carers of people living with dementia:

• Alzheimer’s Society: Carer Information and Support Programme
• Dementia Carers Count: Virtual Carers Centre
• FutureLearn: Understanding Dementia

2. Music

Some research suggests[10] that regularly engaging in music may help to reduce stress, although recent literature has been mixed about this.[11] You could:

• Listen to music by yourself or with the person you care for
• Sing a song
• Play a musical instrument

Choose your favourite music, what’s popular at the moment or a combination of both.

Find music-based groups available to you:

• Alzheimer’s Society: Singing for the Brain
• Dementia UK: Music and Dementia

3. Acceptance and Commitment Therapy

Acceptance and commitment therapy is about learning to accept our thoughts and feelings to enable us to move forward. It incorporates mindfulness and value-based action.

Recent research indicates that acceptance and commitment therapy could be effective in reducing stress among informal carers of people living with dementia,[12] although further research is needed to be certain about this.

Unfortunately, acceptance and commitment therapy is not yet widely available from the NHS but you can seek out an independent acceptance and commitment therapist here.

4. Cognitive Behavioural Therapy

Cognitive Behavioural Therapy (CBT) aims to help you to change the way you think, which is intended to help you to change your behaviour and help you manage stress, anxiety and depression.

CBT has been shown to be effective in reducing stress and improving depression among informal carers of people living with dementia.[13]

You may be able access CBT for free from NHS Talking Therapies or you can find an accredited therapist here.

You can also try some CBT techniques, such as problem solving and reframing negative thoughts which you can find out more about here.

5. Virtual Online Community

Engaging in a virtual online community for informal carers of people with dementia could be beneficial in reducing stress, a recent study has found.[14]

Joining one of these communities could provide opportunities for sharing experiences and problem-solving, as well as the chance to build connections with others.

Virtual online communities:

• Carers UK has a free, online forum for unpaid carers
• Tide-together in dementia everyday is a Facebook group for informal carers of people with dementia
• Dementia Caregivers Support Group is another Facebook group for informal carers of people living with dementia

Key Takeaway

There are many informal carers of people living with dementia, which is rising. It is, understandingly, common for informal carers of people living with dementia to experience feelings of stress with the huge demands of their role.

Positively, there are techniques and therapies that appear to help informal carers to reduce their stress.

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