Advice for someone who fears they’re not helping enough with a relative who has dementia

Talking Point members’ advice for a person who suspects they might be one of the ‘invisibles’ – not around enough to support a family member with dementia.

We asked members of Talking Point for their tips for someone who fears they’re not helping enough with a relative who has dementia.

Talking Point is a helpful community that’s free and open 24/7, where anyone who’s affected by dementia can get valuable support online.

Violet Jane says,

‘Don’t criticise what the primary carer is doing (they will be trying their best). 

‘Make concrete offers of help rather than vague promises (and make sure that the offers suit the primary carer rather than just you). 

‘Don’t swoop in and put a lot of things in place that can’t be maintained by the primary carer once you’ve gone again (eg a regular class or trip out). 

‘Don’t minimise the person’s problems, eg “Oh, it’s just old age”, “It’s just Mum’s funny little ways”, “Mum was always a bit forgetful and disorganised” (the primary carer wouldn’t be doing what they’re doing if it wasn’t necessary).’ 

marionq says,

‘“Do what you promise to do” is very good advice. When I found myself by default responsible for my sister-in-law, I hoped that her blood relatives would step up to the mark.

‘Full of generalised offers and goodwill but nothing I could pin them down on. In fact, two relatives who stepped up and did some visiting had never made any promises. I was very grateful for their help.’ 

Prof’s wife says,

‘You may not be able to help as much as you like, due to work or family commitments. Don’t feel guilty about that, rather make the most of the times you can be there. 

‘Offer the main carer time off and be sure to stick to the arrangement you have made with them.

‘Be sensitive about the different relationships. The person with dementia may value you more because they rarely see you. This can be very hurtful for the main carer.’ 

olddog says,

‘There is a lot with easy electronic comms and systems that can be done remotely to help a main carer.

‘For example, handling finances, handling the Department for Work and Pensions, checking in by email or phone with the home or carers and sharing the results, helping make decisions about aspects of her ongoing care as her health changes, keeping in touch with Mum’s friends and family for her, and so on.

‘Keeping in touch with the person with dementia. And chasing things up (goodness knows there is an endless amount of that!)’ 

Scarlet Lady says,

‘Don’t hang the carer out to dry. Even if you feel there is very little you can do to support on a practical level, keep in contact with the carer (and also with the person with dementia, where possible) just to ask how things are going. Offer what support you can, even if it’s just a friendly ear.’ 

Sarasa says,

‘I think if you are worried you are an invisible, you are halfway to helping.

‘We were very aware that we didn’t do as much as the other children for my mother-in-law, but we lived furthest away and my husband was still working full-time.

‘We did do a few remote things and tried to make sure we were available when needed to cover holidays etc.’ 

nae sporran says,

‘Don’t tell the carer what to do. Listen to them telling you what is being done.’ 

What would you say to someone who feels bad about telling ‘love lies’ to a person with dementia – bending the truth to avoid causing them unnecessary distress?

Let us know by the end of 4 January 2022 so we can share it in our next magazine.

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Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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