Living well with dementia and challenging stigma

Living well with dementia and challenging stigma

September’s guest blog comes from Linda Kelly, Dementia Research and Development Officer with CrossReach. Linda shares some thoughts on how we can live well with dementia, offers some top tips on creating supporting environments and challenges some of the preconceptions we often have around the capacity of someone with a diagnosis.

What’s the first thing you thought of when you saw the title of this blog? Did you see the “living well” or was it “Dementia” you noticed first?

Quite often when the word dementia is mentioned, people get frightened or anxious as they do not know what to expect, or they assume the person with dementia may not be capable of certain things.

Let’s focus on the “living well” part. “Living well” is something we are all capable of achieving, with or without a dementia diagnosis. What does living well mean to you? Quality of life for one person will vary from another person. So we must see what is important to that person and enable & support them where required to fulfil their lives.

Quite often the media refer to people living with dementia as ‘Dementia Sufferers’. Do you think someone ‘suffering’ is leading a good quality of life? For me this then poses a challenge that living well with dementia may be influenced by other people.

Communities have potential to be inclusive and friendly to all, including the person living with dementia. They also offer great opportunities for engagement and can help reduce loneliness and isolation.Offering groups within church settings that are for the whole community is one way of reducing stigma. There are many successful community projects running at present, including art groups, singing groups, cafes and drop in groups for the person with dementia and their carer.

When providing these groups it is important to take into account environmental factors. The lighting should be increased for the person with dementia, there should be signage where appropriate to help the person with dementia orientate themselves and where possible patterns should be avoided in carpets and wallcoverings.

Crockery should have a contrast e.g. a coloured cup on a white table cloth. Where possible if condiments are used at the group they should be transparent. Additional consideration should be taken when preparing signs e.g. ensuring toilet signs have a picture/photograph of a toilet on them.

Yellow and black signs are recommended for those with a visual impairment and also it is good to use a mix of both pictures and words.

The carer has an important role in supporting the person with dementia to live well. Often the carer needs support or respite too, and these projects can provide this opportunity. Support could be in the form of a drop in for some advice or just for a coffee and a chat.

To try and help reduce stigma it is important that we develop intergenerational partnerships. One way to do this is by encouraging schools to visit a club, project or a group. Children learn from what they see and if they are given the chance to build relationships with people living with dementia then this benefits both groups.

We must focus on the abilities that the person with dementia has, as opposed to any deficits that they may or may not have. If we have a club then we should encourage the person with dementia to be fully involved and feel part of the organisation and delivery of the group.

There are so many ways in which we can support people to live well with dementia if we look for opportunities, build relationships and focus on abilities rather than deficits. By doing this we can then see the person before the dementia.

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