4.7 Be socially active

Carers who maintain friendships and social networks often cope better with stress, feel more confident, and have more energy to support their person living with dementia.

Supporting someone with young-onset dementia can make socialising harder, and you may notice friends drift away, misunderstand the condition, or become unsure how to interact. Feeling tired, stressed, or embarrassed may make you want to avoid social situations, but isolation can make caring feel even more challenging.

Practical tips for staying socially active

• Make sure to spend time with people you feel closest to and supported by
• Keep in touch by phone, video chat, email, or messages
• Ask a friend or family member to organise outings if it feels overwhelming for you
• If friends drift away consider joining dementia support groups and organisations

When you are accompanied by the person living with dementia:

• Opt for smaller groups rather than large gatherings
• Choose times of the day that are most suitable for socialising (when they are not tired, are most alert etc.)
• Choose quieter places instead of noisy restaurants or pubs
• If attending meetings or parties, ask about a quiet space to retire to if things are getting overwhelming

Social connection is about maintaining shared experiences and enjoyment. Encourage your person with dementia to choose and actively participate in activities and conversations.

“I stopped getting invited to our weekly trivia nights,” says Sam, who has progressive non-fluent aphasia. “It hurt, but after writing a short note to my friends explaining my diagnosis and what to expect, a few of them started calling and checking in. It made a big difference.”

Sam’s letter to his friends is below with some suggestions how you could personalise it to use yourself:

Hi [Friend’s Name],

I wanted to share something personal with you. I’ve recently been diagnosed with young-onset dementia. This doesn’t change who I am, but it does mean I might sometimes forget things, get tired more quickly, or behave differently than usual.

I really value our friendship and would love to keep spending time together. It might help to [suggest adjustments; e.g. offer to drive, meet in quieter places, have shorter visits].

Thank you for your support, it means a lot to me and [carer’s name, if relevant]. Please don’t hesitate to ask questions, it’s okay not to know exactly what to do or say. Just being there is enough.

With thanks,

[Your Name]

Like Sam, Leo found he had to make the first steps to reconnect with his sister after his diagnosis:

“I noticed my sister was avoiding visiting after my diagnosis,” says Leo, 49, who has Lewy body dementia. “I asked her if she wanted me to explain what my condition means. We had a long chat, and now she comes by almost every week. Socialising is much less stressful now.”