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Making a positive difference keeps Sarah motivated

Visiting Dementia Experts - Timothy Morgan and Sarah Mould (Photo by Mark Tatem)

One morning dementia caregiver Sarah Mould was quickly trying to get a client ready for the day. Suddenly, the cap to a bottle of talcum powder came off, and there was powder everywhere. It sifted down on them like snow. The client, who normally didn’t speak much, looked at it and began to sing a Christmas carol. Ms Mould joined in and they began to laugh. It was one of the many happy moments she has had working in the field of dementia care.Ms Mould visited the Island from the United Kingdom recently to give workshops on dementia care. She travelled with Tim Forester-Morgan the pair founded the Dementia Training Company last year after they were made redundant.More than 80 people who either had a family member with dementia or worked with dementia patients attended the lectures at XL Insurance.Ms Mould’s workshop was about making the lives of people with dementia more meaningful and happy.“Professional care staff sometimes feel that it takes longer to be activity-focused rather than task-oriented,” she said. “Caregivers are still very driven by time and task. Sometimes professional care staff feel there is pressure on them to do things as quickly as they can. Actually, rushing can be quite detrimental as you can have someone with dementia feeling very unhappy for the rest of the day. Then you are spending more time trying to reassure them.”At the workshop, she talked about the importance of collecting life history information. For example, if you know a dementia client enjoyed listening to classical music, playing a classical music CD might make the client’s day. She admitted this could be a challenge because sometimes the client can’t communicate their preferences and life history, and sometimes there isn’t any family to give information.“I am preparing for the fact that someday I might experience dementia, by keeping a life record and a memory box,” she said. “I keep in it lots of objects that are significant to me. I sometimes share that box with people who are in my training sessions to show them what one might look like.”She said that if she did one day become the patient instead of the caregiver, she wanted to be taken to the sea every once in a while, and watch her favourite movie, ‘Pirates of the Caribbean’. She also wanted it known that she liked to wear lipstick and mascara every day.Ms Mould started her career as an occupational therapist in the 1990s. She had no intention of working with older people, or people with dementia, but she found a job working with older people with mental health needs.“I was drawn into specialising in dementia care and I have been doing that ever since,” she said.She found her profession rewarding because she was able to make a difference in someone’s life in a positive way.“I am constantly surprised by what people with dementia are able to do,” she said. “It really has made me think much more closely about what it is to be a human being. It is the little things that are so significant in life. It is the relationships we have, a sunny day; the wonderful taste of something delicious in your mouth that makes life worth living.”She said now her father is going through the diagnostic process and may have a form of dementia. At first she panicked and was upset, but then she decided to practice what she preaches.“It doesn’t have to be a death sentence,” she said. “It doesn’t have to be a really horrible experience, if we can get it right and hold on to the person. We can help him to live well. “Mr Forester-Morgan led a workshop on communicating with dementia clients.“Depending on what type of dementia it is, the experience could be hugely different,” he said. “Different types of dementia can impact communication in different ways. Dementia is really an umbrella term. There is dementia caused by vascular disease, and dementia caused by frontal lobe disease or Alzheimer’s, among other things.”He asked people in the workshop if they thought that dementia stops communication. At first people thought this was generally the case. Then he pointed out that actually there are other forms of communication, such as body language. Scientists now think that only seven percent of human communication is actually verbal; about 55 percent may be through body language. For example, you might say that you are happy, but your body might tell a different story through posture and facial expression.“People with dementia may not understand what is coming out of your mouth, but they often understand your body language,” he said.Like Ms Mould, Mr Forester-Morgan didn’t start out his career intending to go into dementia care. Early on he became an activities organiser in a care home for several years. His interest caught and he became area manager overseeing social activity for a charity in the southeast of England.“In the early days of my career there was a real lack of understanding of the needs of people with dementia,” he said. “Care practice was very different then from what we see today and there was still so much we needed to be doing. People with dementia were often the forgotten few. We understand how to support people with learning disabilities and physical disabilities, but people with cognitive impairment or cognitive disability are not recognised. They are invisible. That is why I started and why I still continue.”He said the people in his workshop had been concerned about misunderstandings that came from miscommunication with people with dementia. They had many questions about dementia care practice.“There seems to be a great need to help the general public’s understanding of dementia be improved,” he said. “There seems to be a need for care practice across the board in every aspect home care, residential care, nursing care to be reviewed and improved. But the group seemed very proactive and positive.”Ms Mould and Mr Forester-Morgan were invited to Bermuda by Elizabeth Stewart. Her charity, Action on Alzheimer’s and Dementia, holds support group meetings the first Saturday of each month at 5pm. The next meeting is on Saturday. For more information telephone 538-5494 or e-mail alzbermuda@yahoo.com .