Jane, who had recently received a diagnosis of dementia, no longer goes to her book club. She spends her afternoons at home. She’s afraid that her club members may know about her diagnosis and worries how they may react to it. She fears that her friends would drift away from her. Jane wonders if she’d be able to go back to the club ever.
Jane is not the only one in this situation. Many persons living with dementia experience social isolation. Due to the fear of stigma associated with dementia, individuals with dementia often retract from usual hobbies, interests and community participation in general. Instead of isolation, our society needs to encourage the inclusion of people living with dementia. Social inclusion means all people are able to participate in community activities, irrespective of whether they have dementia or not. Social inclusion depends on simple things such as the ability to “go out”, volunteer, or pursue hobbies.
The inclusion of persons with dementia has been a challenge largely due to the ignorance and stigmatization. Many members of a community are unaware about how to support a person living with dementia. Furthermore, some members of the general public think having dementia means the person is “fading away” or “senile”. These unfounded ideas about dementia create barriers in our interactions and make the inclusion of persons living with dementia a challenge.
Much like everyone else, persons living with dementia want to continue with their daily tasks that require social interactions. Not being able to do so leads to depression, generalized anxiety and a decline in physical health.
A dementia-friendly community facilitates inclusion of people living with dementia by building awareness and challenging the stigma associated with dementia. Building awareness means we need to focus on one goal – to normalize dementia. When the information about dementia is easily available and often seen, then awareness about dementia increases.
Due to the lack of information and awareness, dementia patients do not seek medical help. In a dementia friendly community, an early diagnosis is possible as individuals are not afraid of stigma and actively seek medical help. An early diagnosis, although it sounds devastating, is also empowering patients and their families to plan the next steps. Apart from social support, an early diagnosis allows for a medical care plan that best suits the person. Furthermore, it enables patients to exercise the best available options.
The stigma around mental health issues needs to be systematically broken down by increasing interaction between persons with dementia and the general public. To foster social participation, a dementia friendly community organizes community activities to include people with dementia. For instance, organizing music bands for dementia patients. Some churches form choir groups for dementia patients. Libraries encourage active participation in events such as book sale, trivia nights etc.
Another service that facilitates inclusion of people with dementia is “Befriender” service. At present, few dementia-friendly communities provide Befriender services. Befrienders are trained volunteers that are willing to assist individuals with dementia to visit places. Befrienders are not mere car drivers but they accompany the patient throughout the task at hand e.g., help while shopping or keep company while a haircut is done. Ensuring enough befrienders are available for helping people with dementia engage in community life is a priority for the dementia-friendly community.
Feelings such as fear of becoming lost, worrying about daily living, and ashamed of having dementia keeps people living with dementia confined to their homes. Providing opportunities to participate and recognizing the contributions of dementia patients ensures inclusion of persons with dementia. Various surveys suggest that inclusion creates feelings of confidence and courage in persons with dementia. It generates overall positive feelings and helps maintain good health in people living with dementia. At Alzcare Labs, we encourage the building of dementia friendly communities to allow inclusion of dementia patients.
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