Dementia in the family: how to share the load

These days, most families have their stories to tell about dementia. In fact, it’s hard to find a family that doesn’t. In this article, we look at some practical ways in which families can hang in there together to offer good support to a relative with dementia.

Be brave: have the conversations

Talking about dementia is very difficult for most people – whether you’re the one raising the topic with a relative (‘You seem to be having more problems lately with your memory..?’) or on the receiving end of someone else’s concern. Perhaps you are worried about your own memory and find it hard to know when or what to say to those around you.

It doesn’t help that, especially early on with dementia, it may be hard to pinpoint problems with absolute certainty. Things may seem ok – but there is a hazy sense that something is wrong.

Like any big issue in life, not talking about dementia usually doesn’t help the situation – it only makes it worse. It has to be done with care, but it has to be done. Someone has to take the initiative, and be supported by others in doing so.

The next step is to seek help from a GP. Hopefully the GP can help with talking through the concerns and issues (although unfortunately there are even some GPs about who may be reluctant to talk about it). It may be that the problems can be treated and are in fact not dementia, which is important and positive too. Or, a diagnosis of dementia may, in time, be confirmed.

Build a network

No one person should be expected to offer all the support and care to a person living with dementia – a network of family and friends is what is needed. This network can support the person with dementia, and also importantly offer support to each other in your caring roles.

Each person in that network comes with different strengths too – one person may save the day when the television breaks down, while another is wonderful at popping in to check that the person with dementia is ok when they are not answering their phone. A relative living overseas may do a great job at finding out helpful information about the aged care system, or dementia, to pass onto relatives close by. No one person can do everything.

It’s important that people in that network are honest about their availability and capacity – not offering huge amounts early on only to fade out of the picture when things become too much. If the load is shared, and shared honestly, this is all to the good.

Without a network of support, it is so much more likely that the lead carer/s will ‘burn out’ from exhaustion and not be able to continue on in their caring role. It matters to everyone that the network works!

Get help from ‘the system’ early

Learn about the aged care system. Often people find this isn’t easy, and that it takes time, but there will be gains in the long run from doing so.

It is valuable if a person living with dementia can accept and ‘learn’ to use home care services early on – it expands their network of support, and it will help them remain as independent as possible for as long as possible. It will also make life easier later on when the person’s care needs increase if they are already familiar with the routine of care staff moving about and helping them within their home.

Learn about dementia too. There is so much information available now about dementia, and this information can help people feel supported and prepared. This may be through online resources, a short course or a local support group – but again, finding it sooner rather than later will help.

Find out if technology can help

New technology comes out all the time, and there is a whole area (called ‘assistive technology’) that is specifically aimed at supporting people with disabilities or care needs. Even everyday technology (like smartphones) can come into its own – if the ‘fit’ is right with the person with dementia. For example, the person may already enjoy using videocalling to stay in touch with a relative overseas. This may become particularly important if the person is less able or likely to go out on their own as their needs increase. A shared calendar app may help the family network know when the person with dementia has key appointments to attend.

Focus on facts

In the murky midst of family life, along comes dementia to throw things into even more confusion. At times, it may seem so unclear as to what is going on – family members may differ in their views, and things can change from one day to the next. It can be very hard to have a sense of what the future will hold.

There are no simple answers to this complexity. Hold on to key facts. Keep in close face-to-face contact with the person with dementia, rather than expecting them to be completely reliable reporters on their own life. Be gentle, and support one another – for who knows when any one of us will need such support?