2.12 Tell others how you want to be supported

Many family and friends are well-intentioned but unsure how to help. It often helps to say what kind of support works best for you.

If you have young-onset dementia

If you are a person with young-onset dementia, preparing responses so you know what to say has been helpful. Some examples are:

• When people start to get impatient Lina says, “If I’m a bit slow or forgetful, please give me time. I’d prefer you don’t correct me; I usually get there at my own speed.”
• Anne tells friends, “I need my diary to get organised, so can you please phone me at home to make plans so I can write it straight into my diary. If you tell me while we’re out, I might forget.”

Sometimes carers or family members become over-protective or take over too much. This usually comes from love and concern, but it can make the person with dementia feel frustrated or sidelined. Having an honest conversation can help balance independence and support.

You might say:

• “I sometimes feel a little useless because you do so much for me. Can I keep doing the shopping even though I may forget things?”
• “I don’t like it when you talk over me while we’re at the doctor. It makes me feel like I don’t have a say.”

These conversations can be hard, but they help keep relationships equal and respectful.

If you are a carer

Some carers told us they find it difficult to ask for help. It’s not ‘giving up’ or shirking your responsibilities, it’s an important part of looking after yourself, which is essential if you want to support someone over the long term. Some examples carers have told us are:

• Beverly found she was phoning around to give her large family updates following every doctor’s visit with her sister. Looking after her frail mother and her sister with young-onset dementia and working part time was too much to spend her precious time repeating the same story to numerous concerned family members. No one had thought to offer to be the family spokesperson. As soon as Beverly asked, one of her siblings took over this role.
• Andre was getting anxious each time Gerda left him at home alone; she received multiple phone calls from him every time she went out. A retired neighbour had previously offered assistance. Gerda asked about coming over to play cards with Andre. He was happy to oblige, which gave Gerda time for shopping or a visit to the hairdresser without interruptions.

It can be helpful to think through things that give you pleasure or recharge your batteries. Write them down. Think about how friend and family can support you continuing to do those things. Sue liked time at home alone. She was able to ask her son to take her husband out to the hardware store on a regular basis, which they both enjoyed. Sue was able to have the quiet time alone she craved.

Photo: Kelly Sikkema via Unsplash.