The value of good training for every disability can never be underestimated. Dementia is no exception. Carers who have been trained appropriately in dementia awareness develop the knowledge, competence and skills to deal with the spectrum of difficulties that can be associated with this progressive disability.
It is estimated that almost every adult social care service will support people with some form of dementia. The challenge will be to provide services that ensure people who have dementia can live with higher levels of independence and can experience greater levels of wellbeing. According to Gitlin and Corcoran 2005, as cited in O’Sullivan (2013: 40) key person-based contributions to behaviours in the rehabilitation context may include:
Pain, fatigue due to poor sleeping patterns, fear, anxiety, underlying medical conditions, significant sensory changes, constipation and dehydration.
They further state that environmental factors affecting behaviours include:
Cluttered and difficult to navigate environments, unfamiliar environments and sensory overload due to the presence of others and the complex communication patterns of others.
Unfortunately, due to lack of dementia training, it is not always understood that the environment is having a negative impact on the person – it is often believed that the person with dementia is causing the difficulty. We can never underestimate the value of the home and community environment when caring for a person who has dementia.
It is also essential for services to recognise that dementia affects a significant number of people with learning disabilities. According to Kerr, as cited in O’Sullivan (2013:41) studies have shown that people with Down Syndrome have a much higher rate of Alzheimer’s type dementia. Levels of monitoring must be improved for this group. Many dementia-induced behaviours may be attributed to the learning disability rather than the dementia disability. This can delay diagnosis and, in many cases, even prevent diagnosis.
Carers need to be skilled to understand the signs, symptoms and progression patterns of this disease. Everyone needs to know that dementia is a spectrum and it is only through the provision of person-centred care that we can meet the needs of people with dementia and ensure they remain in their communities, even at the end of life stage. It can never be “one size fits all” and our dementia training programs must have personhood and person-centeredness at their core.
In the words of a professional caregiver:
“I believe we will all be affected by dementia at some point in our lives. Every carer should have good dementia knowledge before working with a person who has dementia”.
Frankie O’Sullivan 19th May 2014