Coping with dementia: Person first, patient second
View(s):Dementia is an umbrella term for a number of different diseases that affect the brain in different ways. It is a disease that gets worse over time, affects more than one aspect of thinking, such as memory, language, behaviour, visual processing, and is severe enough to affect everyday life.
The disease doesn’t just affect one person, it affects the people around them, including family and friends. The World Health Organisation has described dementia as ‘one of the major health challenges of our generation’. An estimated 50 million people worldwide live with dementia, and there are nearly 10 million new cases every year as we live in an ageing population. China, India and South Asia are experiencing the biggest growth in the incidence of dementia. This has brought increasing awareness of dementia, and an uncertain journey for carers, drifting, and losing connection, and it can be daunting, even overwhelming at times.
Dementia also raises important questions about our own attitudes to aging and illness. It raises questions beyond the boundaries of dementia to do with how we think of ourselves as people. With the gradual loss of self, and a gradual erosion of the characteristics that makes a person who they are, dementia can threaten the very existence of the self. But does dementia destroy the person as it destroys the brain? Can we retain the person even as cognitive ability declines since we are embedded into family, cultural setting and personal history, if we care deeply enough to maintain a relationship, and hold on to the essence of who the person is? Research suggests therapeutic story telling oriented to a person’s reality, to match their life story, interpretation of the situation, with intention to reduce anxiety. It is important to pay attention to the many things that can support or hinder personal connection.
It is also important to change the channels of communication as a person with dementia gradually loses their ability to communicate and process information over time. A person with dementia will struggle to express themselves clearly and to understand others. Research shows that impairments in word finding, language skills and non-verbal communication is a significant problem for people with dementia, and it can affect the care they receive. When people with dementia experience poor communication it creates conflict, negative emotions for both carers and the patient, feeling of neglect and increased problem behaviours, all of which decrease the quality of life. Whether resisting care or exhibiting apathy, a person with dementia is attempting to communicate, and the caregiver must learn to ‘hear’ this language.
It’s important when communicating with someone with dementia to understand that they are not being deliberately difficult, and to adapt our communication style to the needs of the person. Communication must be understood in terms of both non-verbal and verbal communication. Non-verbal communication can include posture, gestures, facial expressions, eye contact, distance, physical appearance, touch and tone of voice.
Although we recognise that people with dementia may appear to have a limited range of emotions, research suggests this is not necessarily the case. A person with dementia may still experience the full range of emotions, but has difficulty expressing them. They have feelings as intense as the carers, perhaps more because they feel trapped within their own minds. It is important to continue a conversation in different ways when they are no longer able to talk to us about their feelings and experiences. Doing things together, holding a hand, providing objects to hold, looking at things that take their attention, and listening to music can make a difference, creating feelings of warmth and affection.
Keep the person with dementia occupied in a meaningful way, take time to spend with the person so that they feel valued and cared for, help maintain good health through diet and exercise tapping into the faith/spiritual heart of the person. Take each time with the person as a “moment” that is new, in a calm manner responding to the individual moments. It is important to reduce the stigma surrounding dementia and provide a supporting and caring environment, including using language that influences how people with dementia are viewed,: it must be accurate, balanced and respectful. We must remain focused on the person, and not the symptoms of dementia. After all, someone with dementia will have significant life experiences that define who they are.