Dementia Care Focus is on Patients, Families and Caregivers

As the Research Chair in Community Management of Dementia at Ontario Shores my work is trying to improve the lives of people with a dementia diagnosis and supporting them, their families and everyone involved in caring for them to live as well as possible.

Dementia is an incurable condition that arises through damage to the brain that gets progressively worse over time. Depending on the cause – and there are many different ones – and the area or areas of the brain that are damaged, people with dementia will experience a range of changes in their behaviour, abilities and functioning. Typically these happen because their cognitive functions such as memory, attention and planning are impaired by the brain damage. In some types of dementia the changes appear slowly over a period of time, whereas others changes seem to arrive quite suddenly. Over time people experience increasing loss of their cognitive functions making it hard for them to manage their daily lives without help.

Most people with dementia live at home with members of their family members providing the majority of their care and support. The practical demands of caring are quite large, as they can include meeting the physical, emotional and psychological needs of people with a dementia diagnosis. Caring for a relative - be it a partner or parent - also places a strain on relationships and the impact of this cannot be underestimated. Additionally, relationships are a critical component of successful care delivery by services for people with dementia and their families, including day care, respite care, acute medical and long-term facilities. However, the challenges staff face in developing caregiving relationships with people with dementia is often overlooked.

My work is about recognizing the challenges faced by these three groups – people with a dementia diagnosis, their families and care staff – and developing interventions and techniques to meet their respective needs. We involve people with dementia, their families and care staff right from the start to make sure that anything we develop is going to work in the real-world. And the evidence is that we can develop interventions that make a difference to people’s lives. For instance, using touch screen computers we have developed CIRCA, an application to support conversation between people with dementia and caregivers. We have also developed Living in the Moment - a set of touch screen based games that people with dementia can play independently or with another person. Information about both of these systems can be found here: http://www.circaconnect.co.uk

Both of these activities has a positive impact on caregiving relationships and helps family members and care staff to keep seeing the person with dementia as a person, rather than just seeing the diagnosis. Other work using nonverbal communication is helping relatives and members of care staff to communicate with people whose dementia has reached a stage where they are unable to walk or talk. Giving caregivers the tools and confidence to keep communicating with people who have dementia is a major boost to their own self-esteem and job satisfaction.

While it may seem that dementia is a completely negative condition, my research over the past 20 years, with thousands of people with dementia, their families and members of staff in a wide range of care services across different countries, has convinced me that it is possible to live a good life with dementia. People with a dementia diagnosis are people first and foremost and in the training I have been involved in developing we start with the Golden Rule “Do unto others as you would have others do unto you.” This is a simple but effective way of keeping our fellow human beings at the forefront of every development we make in the field, whether they are a person with a diagnosis, a family member or a member of care staff. Everyone is a person and should expect to be valued and respected at all times.