The Dementia Friends Program of SCARF (Schizophrenia Research Foundation) is a unique initiative aimed to create dementia friendly community in Chennai. Hear from the young volunteers themselves how it not only helps engage persons with dementia but also makes the youth aware and empathetic.
Around 4.5 million people in India are suffering from dementia and the figure is likely to double by 2030, according to health experts. Despite the large numbers, only 1 out of 10 people with dementia in India get timely diagnosis, appropriate treatment or care.
The Dementia Friends Program, a unique initiative by Dementia Care in SCARF (DEMCARES) aims to create a dementia friendly community in Chennai, by increasing awareness towards dementia among the youth. A dementia-friendly environment is the one in which persons living with dementia are empowered to have high aspirations, build confidence and participate in activities that are meaningful to them. “We often attach reasons behind issues than looking at the science behind them. Programs like these are very important as they give us proper information and help in creating a dementia safe environment,” says Swarna, a Dementia Friends volunteer.
Another volunteer, Vriti, added: “This program has made me more aware and conscious about elderly people. My approach to a lot of things has changed. The Dementia Friends Program has made me understand the dynamics of it and has enabled me to help other individuals. I think programs like this should become compulsory. We should have workshops and seminars to increase awareness. Also, we should advocate this on a much larger scale.”
Caregivers are often very stressed caring for a person with dementia. Strain is exacerbated by the lack of supportive response from local health services and, in some instances, an unsupportive family. In this program, each volunteer is paired with a family that is looking after a person with dementia. The volunteer makes weekly visits to the assigned home, providing companionship to the person with dementia and respite for the caregiver. The volunteer also interacts with the family members and conducts structured activities. Our volunteers have formed special relationships with the people they are paired with. “The connection is very fulfilling and makes me care a lot more for the elderly,” says Deepika, a Dementia Friend.
The Dementia Friends Program has the potential to impact the way in which we view and interact with the elderly. It focuses on the individual and emphasizes that each person has unique values and a personal history that should be respected. It also explores the meaning of dignity and ageing with dignity and what it means to participate in one’s social and cultural environment. “More than being Sympathetic, this program has made me Empathetic. I visit my grandparents more often now and spend quality time with my family. I also believe that youngsters should take part in such programs to understand the elderly and be sensitive with them,” felt Kavin, a volunteer.
The volunteers initially focus on building a rapport with the person they are paired with by finding out what their interests are. The caregivers sometimes will facilitate this process for the first 2-3 visits.
They then begin to do two things -
- Life story work
- Individual activities
Life story work
Life story work is used in countries like the UK, it can be a form of reminiscence therapy and basically involves the person with dementia focusing on certain aspects other life. For e.g what their childhood was like? Where they lived? What they did for work etc? This creates a composite 'scrap book' if you will of the person and forms the basis of relationship for the volunteer. Through this they find out what areas the person disinterested in and what they like to talk about. The life story work could also be used by the family to draw the person into stories that they know very well and therefore feel less insecure about relaying.
Individual activities
The activities the volunteer does are based on the person’s interests. So depending on the person, it could involve listening and singing Carnatic music, doing puzzles, playing simple card games, reading the news and discussing politics etc. Some activities are based on CST - Cognitive Stimulation Therapy that DEMCARES staff conduct at the centre for active ageing. For the volunteers this is mainly a point of departure, it is to give them an idea of how seemingly mundane things can be made into activities. For e.g. someone that is interested in politics could be shown pictures of famous political personalities and asked who they are. They must of course be from the time period most familiar to them, so between their 20's -60's This simple identification game could be used to start conversations around government systems, famous events, etc
Here are some helpful tips from our Dementia Friends volunteers, which can make working with a person with dementia easier:
- Maintain their sense of individualism and dignity - recognize that as individuals they have unique values and personal history and it is essential to maintain their dignity and respect
- Develop purposeful activities to match the interests of the individual
- Maintain a schedule
- Minimize noise
- Keep the working environment well lit
- Use memory prompts
- Be patient and flexible
To learn more about our Dementia Friends Volunteering program, please write to us at dementia@scarfindia.org or visit our website www.dementiaindia.org
DEMCARES would like to thank all the families & volunteers for their support and our Ms. Sanjana Jain, Intern, for the interviews and this article.
