Dementia Aware: what you need to know about engaging, enabling and empowering people with dementia
The word dementia conjures up so many different thoughts: a loss of memory, a loss of independence, a loss of function; but instead of focusing on the debilitating and despairing features of dementia, what if we acknowledged and supported people with dementia, if we engaged them, enabled them to live as productive members of society and empowered them so they could continue to live a full and happy life. If we can promote a better understanding of dementia, dispel the myths and misconceptions, and reduce the social isolation and stigma that so may people with dementia experience, we can help people with dementia feel accepted and respected.
We all have a role to play in recognizing people with dementia as part of our community and helping to support their independence, value and social inclusion.
We can ENGAGE people with dementia by:
- Hearing their voices and listening to what they have to say
- Including them in the development of dementia focused policies and programs
- inviting their participation in community development plans e.g. dementia friendly community. Many communities in B.C. are dementia friendly with a focus on helping people with dementia feel included and supported in the places they live, work and play (www.alzheimer.ca/en/bc/About-dementia/Dementia-friendlycommunities)
- Understanding the challenges they face, working with them, and advocating for them
- Embracing their wisdom, humour and life stories
- Encouraging them to volunteer, mentor, talk to students, offer peer support to others with dementia. It is through action and ‘giving back’ to the community and by helping others, that people with dementia find their life to have meaning and purpose
- Valuing our relationship with people with dementia and recognizing our shared humanity. We all have so much we can learn from one another (mutuality)
Support from others may enable the person with dementia to keep doing the things that are important to them. Support can come from community healthcare agencies, private care, non-profit agencies, Alzheimer Society of BC, family physician, caregiver, family, friends, neighbours, and volunteers
We can Enable people with dementia by:
- Helping them to keep their minds active: sharing life stories, singing, computer games, art. Studies have shown that any activity that engages and stimulates the brain is likely to be beneficial
- Encouraging them to exercise and live a healthy lifestyle
- Taking them for lunch, to a concert, picnic in the park, visiting with them at home.
Research shows that social engagement and physical activity can improve the quality of life in people with dementia, reduce changes in behaviour and may even delay cognitive decline
- Offering support: help with groceries, go for coffee, accompany to Minds in Motion, walk the dog
- Recognizing what they can do and supporting them in achieving goals
- Helping them to get appropriate support and to navigate the healthcare system
- Participating in fundraising activities e.g. Walk for Memories
- Educating ourselves about dementia and advocating for improved supports/services
- Promoting public awareness and understanding about dementia
Encouraging people with dementia to stay engaged and continue to participate in activities they enjoy can be very empowering and help them to live a full and happy life.
We can Empower people with dementia by:
- Being respectful: society places too great an emphasis on reality and memory, thus excluding people with dementia from the sphere of human dignity and respect (Post, 1995)
- Being patient: do not talk or make decisions for them, let them ‘decide to decide’, do not talk loudly or very slowly, be genuine, be conscious of body language, facial expressions and gestures. People with dementia can still sense when someone is being disrespectful and treating them unkindly
- Being supportive: offer gentle reassurance or help, do not assume the person cannot do something. With a little bit of support, patience and encouragement, most people with dementia can accomplish most or part of a task.
- Being Kind: look at the person, smile, say hello, do not use derogatory or impolite words or call names
- Being forgiving: sometimes a person with dementia may display odd behaviour or gestures, may repeat same story over and over, may forget someone’s name or say something rude or unkind. Do not challenge, correct or reprimand the person; let it go
- Being mindful: acknowledge the person’s culture, values, faith, lived experiences. Treat the person with dementia as you expect others to treat you
Benefits of the 3 E’s for people with dementia include:
- Being treated as an equal
- Being accepted, valued and respected (personhood)
- Being a part of their community (social inclusion)
- A sense of purpose and accomplishment
- Acknowledgement of skills and experiences
- Being able to address issues related to dementia and influence positive change
- An increase in self esteem, self worth and confidence
- Being able to share the perspective of the ‘person living with dementia’
It is important to remember that dementia is not the total character of the person, there is so much more; a person who was once a child, a young adult, a working person, a family person who contributed to society, who influenced, guided and shaped the lives of those around him/her. That person, the inner being is still there and will always be right until he/she takes a final breath.