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You may have suspected it for some time, but learning that a friend or neighbour has dementia can still come as a shock. What should you do next?
Stay in touch
Research from Dementia Australia tells us that, unfortunately, many people with dementia and their family carers say they end up feeling very isolated and lonely following a diagnosis of dementia. Friends tend to drop away, unsure about what to do or say. As a result, people with dementia are among the loneliest people in Australia (You can read more about this in this Dementia Australia report here.)
This pattern of avoiding or dropping out of contact with people with dementia has a lot to do with stigma. In Australia and in many countries, a diagnosis of dementia still carries a lot of stigma. People are frightened of it, and perhaps embarrassed too – both the person living with the illness, and others too.
But stigma and secrecy don’t help anyone, and usually make things far worse. Work at staying in touch, as uncomfortable as that may be early on.
Keep up with regular activities
Whatever it is that you enjoy doing with your friend with dementia, try to keep up with it. Whether that’s just chatting over the fence every now and then, going out for a coffee, having an annual BBQ get-together, or giving them a lift home from a regular meeting – keep up with these usual activities.
If in some way the activity works best if adjusted a bit (say, an outing made more local, or telephone calls are shorter), so be it – but do keep it up. Check in with the person with dementia and family members to see if they have thoughts or advice on any changes or adjustments necessary. It all depends on the individual’s experience of living with dementia as to what or whether things need to change, and by how much. You can’t be expected to know – so just try your best to ask and check.
Look out for the carers
Those who are most involved in day-to-day support of the person with dementia will also need support themselves – whether that’s simply checking in (‘How’s your day going?’) or listening more to the ups and downs of the caring role.
If you feel you can offer more in the way of support, let the carer know. Even small things can make a difference and help family carers: for example, being prepared to hold a spare set of keys, or keeping an eye out for the person with dementia.
A person with dementia is best supported by a whole network of people – not just relying on one or two people who, over time, will often find things very hard going.
Learn a bit about dementia
The pattern of avoiding people with dementia comes about in part because people often don’t know what to say to people with dementia – they are concerned about whether they will be understood or whether they should change how they communicate with the person. (You can read more on this in this Dementia Australia information here).
The best way to tackle this is to learn a bit about dementia. There is now a lot of information available online, including on this site. Look also at Dementia Australia’s website at www.dementia.org.au/
If everyone becomes more aware of dementia, and more willing to talk about it openly, this will be a great help to people living with dementia and their family supporters.
Become a Dementia Friend
One of Dementia Australia’s big campaigns is to encourage as many Australians as possible to become ‘Dementia Friends’.
The aim of the campaign is to help support people with dementia to remain included, accepted and connected with their community.
Lots of individuals and organisations are now working on ‘dementia-friendly’ projects: for example, one project is trying to improve public transport for people with dementia in western Sydney, and another in Tasmania is working to make community gardens more welcoming to people with dementia. You can find out more here: www.dementiafriendly.org.au/
Anyone who keeps up with and supports a friend who develops dementia is ultimately a dementia friend. They are likely to learn a lot along the way too. As more and more people are diagnosed with dementia, this is sure to prove helpful in the future.