Getting a diagnosis of dementia can be a difficult and long process. Often people are told there is nothing much that can be done for you, go home and get your affairs in order. With more and more people being diagnosed with dementia, and with a better understanding of the impacts of the disease, it is well and truly time to challenge this way of thinking.
The traditional way of viewing dementia considers only the changes that are occurring in the brain. This medical model of dementia focuses on managing the symptoms or changing behaviour that results from the disease. A person with dementia may be referred to as disappearing, no longer the person they were, or not a person at all – just a shell. Well meaning care staff direct focus on a person’s basic physical needs, such as being fed or kept clean, without time or training to consider the person will have other real human needs just like any person without dementia.
Just think of how people with severe mental illness used to be treated – locked up in institutions and sedated – in order to manage the symptoms of their disease. No consideration for what the person may by thinking or feeling. As with dementia, people looked at the disease first and the person with the disease second. This limited view hindered any ability to connect with each other, and treat each other, as human beings.
Although medical treatments for dementia have not changed in over 20 years, what is changing is the way people think about dementia and how they approach supporting the person living with it. The foundation for this change in thinking is based on viewing the whole person, not just their disease. This means looking at a person’s life story: who they are, where they were born, what jobs they had, whether they married or have children, what is important to them and gives them purpose, as well as their experience of life with dementia.
A person with dementia will often have lived a long and interesting life, and their life experiences do not stop when they are diagnosed. Quite the opposite. The diagnosis is just another part of who they are now, another part of their life experience. However, the environment and the people who surround them will impact how a person experiences dementia. If the environment is enabling, if family and friends are understanding and supportive, the chances are a person with dementia will have a much more positive lived experience.
Understanding that everyone’s experience of dementia is different has led to the development of a number of effective early interventions for people living with the condition. These early interventions approach each person as an individual and consider their own unique life experiences. They view dementia as just one part of the whole person.
An example of an emerging support for people with dementia is occupational therapy. Traditionally used to help people get back to work after injury, occupational therapy is proving to be an invaluable tool to support people with mild cognitive impairment through to the later stages of dementia. Why occupational therapy? It combines practical advice with changes to the way a person approaches a task – such as preparing a meal or getting dressed – in a way that is specific to that person. Not only can occupational therapy support a person’s existing abilities, it can help to reduce carer burden and stress, and ultimately contribute towards improving the overall wellbeing of a person with dementia and their carer.
When a person is diagnosed with dementia they are still the same person as they were before – however now they are living with dementia. Just as another person may live with a diagnosis of diabetes, cancer, heart disease or any other type of potentially life limiting condition.
It is true dementia is a terminal disease, and there is no cure. However people diagnosed with dementia can live well for a number of years. Although this does not lessen the impact of dementia on a person – it is still a life changing and traumatic experience – it is a long time to sit around in your home and do nothing other than ‘get your affairs in order’.
There is still a lot of living to do if you are diagnosed with dementia. The journey is different for everyone.