Updated: Jul 2, 2019
There are about 50 million people worldwide who have dementia, and it is important to find ways for them to live well.
New research has identified the factors that enable people with dementia and their carers to live as well as possible.
To me, the holidays mean catching up with family and friends and spending quality time with loved ones. I was visiting a friend and spent some time with her mother Gretta. Gretta has been diagnosed with dementia for 3 years now. For the first two years, my friend didn't really realise how her mother's dementia would change her life, because her dad looked after Gretta. But since her dad passed away a year ago, my friend has become her mother's primary caregiver.
I have worked with many people with dementia, and I understand the challenges they face. So, I was trying to have a conversation around making their activities of daily living (ADL's) safer and easier. At one point, I realised that Gretta seemed to have given up on life after her husband of 40 years had passed away. I asked her what she wanted and what would make her happy. Gretta said, "I just want to live well for the remaining years of my life, and not be a burden on my daughter and her family." What followed was a very intense discussion, strong emotions and tears too. On my way home, I kept thinking about Gretta's words: "live well", and just couldn't stop. I decided to do some research on the topic, sat with my laptop and started reading articles on dementia and quality of life.
One article in particular caught my eye, a recent large-scale study has produced two new papers published in Alzheimer Disease & Associated Disorders. The summary of the research is that psychological aspects, such as optimism, self-esteem, loneliness and depression were closely linked to ability to optimise quality of life and wellbeing in both people with dementia and carers. Experience in other areas of life influences psychological well-being and perceptions of living well. Physical health and fitness was important for both groups. For both carers and people with dementia social activity and interaction also ranked highly.
For people with dementia, their social situation and their ability to manage everyday life were important factors. Carers rated their caregiving experience, and whether they felt trapped or isolated, as a key indicator in whether they could live well.
Dr James Pickett, Head of Research at Alzheimer's Society, said: "People with dementia have the right to live well -- however without clear definition it can be hard to determine what 'living well' really means. After looking at several factors, the IDEAL programme has found that psychological health has the biggest impact on people affected by dementia living well. Too many people face dementia alone without adequate support, and interventions that improve self-esteem, challenge negative perceptions towards ageing and reduce depression or loneliness could all help improve the psychological health of people affected." I strongly agree with Dr. Pickett, and also believe that research will beat dementia and while we strive to find a cure, we also need to improve life for the millions of people across the world struggling with dementia.
While it is reassuring to learn that a lot of effort and resources are being channelled towards research and health policies related to Dementia, those of us living with and caring for people with dementia need to understand and adapt to the complicated lifestyle that comes with the diagnosis.
To all caregivers: don't be shy to ask for help. Understand that you need to take care of yourself in order to be a good caregiver. Here in Canada, we are fortunate to have access to many programs and resources to support us through the different phases of dementia that our loved ones experience. Being a caregiver for someone with dementia is definitely difficult and can be stressful. Reach out to me if you need help or advice.
Healthcare Consultant, in4MED
A comprehensive model of factors associated with subjective perceptions of "living well" with dementia. Findings from the IDEAL study:
The author of this blog post is a Physician with over 10 years of experience working in the healthcare system as a clinician, researcher and educator. She is passionate about healthcare for older adults and strives to be a resourceful inspiration to caregivers.
*No content on this site, regardless of date, should ever be used as a substitute for direct medical advice from your doctor or other qualified healthcare professional.