Caring for an individual with dementia can be challenging. Whether you are a family member, friend or healthcare professional, understanding how to support and meet the needs of a person living with the disease can be complex and overwhelming.
Most people who find themselves in the role of caregiver to a person with dementia feel unqualified to support the unique and ever-changing characteristics of the disease. This fact is why specially trained caregivers – known as Dementia Champions – are such important members of a care team and are key to managing the needs and well-being of the person living with dementia.
Who Are Dementia Champions?
According to the Dementia Champions Network, Dementia Champions are individuals who seek training above and beyond what is required of them to better support people living with dementia. Dementia Champions come from a variety of backgrounds and include allied healthcare professionals, family members and friends of someone with dementia, or individuals in the community who have an interest in learning more about the disease and those who experience it.
Dementia Champions are:
- Advocates for people with dementia and their families
- A source of information and support for those in the circle of care
- Individuals with excellent knowledge and skills in the care of people with dementia
- Individuals who have leadership qualities and communication skills to act as a change agent
- Self-motivated and act as a role model in the delivery of person-centered care
What Dementia Champions Do
Dementia Champions are trained to support not only people living with dementia, but also their family members. In an article published by the Welch National Health Service, entitled “Day in the Life of Dementia Champions,” Meryl Williams, a clinical lead nurse and trained Dementia Champion, describes her role:
“The person living with dementia is the person that you are looking to support but they come with informal carers who are sometimes at their wit’s end, they are emotionally and physically fatigued and don’t know where to go. Some of them are desperate. To them it looks as if their relative has gone but, as we tell them, they haven’t gone, we just need to find them by a different way. That’s what dementia champions will do, they will give a sense of calmness and support.”
The Dementia Champions Network explains that being a Dementia Champion also means:
- Acting as a resource and support for the person with dementia, staff and families/carers.
- Advocating for the person with dementia.
- Liaising with other services to access the most up to date knowledge on dementia – services such as the Alzheimer’s Society, the Carers Society, Dementia Services Information and Development Centre (DSIDC) services and others.
- Promoting ongoing culture changes in the development of best practice dementia care.
- Sharing best practices with colleagues.
- Supporting the roll-out of initiatives to improve dementia care.
Ways to Support Dementia Champions
While it is fantastic that resources are being allocated to train Dementia Champions, research indicates that the training is simply not enough. An abstract published by the U.S. National Library of Medicine National Institute of Health reviewed survey results of 34 Dementia Champions, including their views on their role and the training they received. The results concluded that “expectations of ‘champion roles’ in dementia need to be re-visited, specifically in relation to the remit of the role and the level of education, preparation and support required for Dementia Champions to become change agents in dementia care.” In short, the Dementia Champions found the training to be useful, but limited.
Areas suggested for further professional development included:
- Clarification around the expectations of the role
- Context-specific skills training
- Formally recognized education programs
Another abstract published by the National Center for Biotechnology Information (NCBI) suggested establishing a Community of Practice for Dementia Champions in order to give them further support and clarification around their roles. This group would be supportive and unifying, and members would have the authority to “implement dementia training and development needs for the health and social care workforce.”
With increasing rates of Alzheimer’s and dementia, Dementia Champions are a welcome addition to the care team but need support and training from the senior living and healthcare industries to make the greatest impact.
Have you or someone you know been supported by a Dementia Champion? We’d like to hear more about your experience in the comments below.