Jim did not receive the invitation for the annual potluck at his church. He ran into Susan, who was a coordinator at the church and also Jane’s friend. Susan explained, “Jane had mentioned about her tests for dementia. I’m sure she needs more rest and care, so this year we thought it was best not to send you an invitation. But if she feels up to it, then I can certainly mail it.” Jim was aware that his wife’s dementia might lead to some lifestyle changes but he was not prepared for them to be so immediate.
Susan’s reaction to Jane’s situation was out of ignorance. In various surveys, the caregivers of persons with dementia have indicated that their friends and family were “drifting away”. Some friends were willing to hear more about dementia if they did not know enough. But more often family and friends were reluctant to talk about it or made insensitive remarks about it. Persons with dementia are left unheard and almost invisible within their social spheres.
In many communities, people lack awareness about dementia and the needs of persons living with dementia. The diagnosis of dementia can be devastating for the person with dementia. When social rejection is added to it, it leads to mental health issues such as depression and anxiety. To challenge the stigma associated with dementia and improve the quality of life for persons with dementia, initiatives such as dementia friendly communities are necessary.
Research shows that it is not necessary to build brand new communities for persons with dementia. But it is important to make our present communities aware of dementia and design areas of activities to meet the needs of persons with dementia. For instance, dementia-friendly communities have dementia awareness training programs. Employers encourage their staff to attend these training sessions and to know more about how to serve customers with dementia in a better way.
Trained dementia friendly employees help in raising awareness about dementia in subtle but concrete ways. Some wear purple pins or ribbons to indicate that persons with dementia could come up to them for assistance. Some focus on making their shops or businesses dementia-friendly by adding adequate signage, no-hurry lanes. Overall, trained employees contribute significantly to make persons with dementia heard and visible in social life.
Another way in which communities can build awareness about dementia is by having social clubs that include persons with dementia. Some local cafes have hours dedicated for persons with dementia. During these hours, activities are conducted for persons with dementia with the help of volunteers. These memory cafes help other pubs and local businesses to become aware of the needs of persons with dementia. Furthermore, to increase participation in dementia-friendly initiatives, some dementia friendly communities have yearly awards for ‘Best dementia-friendly business’ or ‘Best dementia-friendly employee’.
A dementia-friendly community challenges stigma around dementia by enabling persons with dementia to carry out activities of their daily living. It puts the person first and then their diagnosis of dementia. At AlzCare Labs, we are committed to building products and systems that will empower persons with dementia. Connect with us at email@example.com