For Day 2 of Dementia Awareness Month 2015 I am continuing on with the topic of women and dementia, with a version of an article that was co-authored with two colleagues, Dementia Consultant, Michelle Harris and Associate Professor Cassandra Szoeke.
Dementia is the biggest health and social challenge facing the developed world. In Australia approximately 344,000 people are living with a diagnosis of dementia with an expected one million people diagnosed in Australia by the year 2050.
The current number of people diagnosed with dementia globally is more than 46.8 million, and one person every 3.2 seconds is currently being diagnosed with dementia, the majority being women.
The public interest in dementia continues and there have been many articles published on the ability to eat well and exercise to lower the risk of developing dementia however the links between hypertension (high blood pressure) and reduced oestrogen in women has not been wildly publicised.
Michelle, Cassandra and I met at the National Dementia Congress in Melbourne in February this year, where we were all presenting on our own work in dementia. Michelle presented in Melbourne on her work and experiences as a dementia consultant employed by the Bethanie Care Group in Western Australia. The majority of her clients are women from ages 50 -85 years of age. Dementia impacts the person and their family and friends, and she provides information to people living with a diagnosis of dementia in a positive image so they can live zestfully to maximise a life that has a purpose, maintains joy, connectedness, and wellbeing and promotes individual choices and human dignity. She firmly believes, living well with dementia is treatment for dementia.
After listening to Cassandra a leading neuroscientist talk about her latest research she wanted to enforce this message to women across this country.
We are aware that the changes in brain pathology causing dementia starts to develop 20 years before the first symptoms of memory loss – if more women were able to maintain regular health checks on their blood pressure and hormone levels this can possibly lower the risk of them developing the symptoms of dementia as they age.
Meeting Michelle and Cassandra motivated the three of us to write this article, as the impact on women of dementia, either through a diagnosis, or as the key support person with someone with dementia in the community, it is a significant women’s issue, and we also all have very vested interests!
As a person diagnosed with younger onset dementia at the age of 49, a working a mother of two teenage boys also studying at the University of SA, initially I cried for weeks about the diagnosis. I thought it was an old persons disease, even though I have worked in my first career as a nurse in aged and dementia care. My youngest son even questioned; “But mum isn’t that a funny old persons disease?”
Upon diagnosis I was Prescribed Disengagement™ from my pre diagnosis life, which the health care system currently still supports. This sets up a chain reaction of hopelessness and fear, and is the beginning of learned helplessness, which negatively impacts a person’s ability to be positive, resilient and proactive, intimately affecting their perception of well-being and quality of life. Months after this Prescribed Disengagement™, I began to believe that the use of as many non pharmacological and positive psychosocial interventions I could find might support me better to live well with dementia.
Whilst there is emerging evidence-based research to support this, the health care system does not yet fully promote or support this approach, nor prescribe them. Authentic brain injury rehabilitation needs to be a part of our care plan; ethical pathways of care need to be offered to us, in the same way they would have if I’d had a stroke.
We also need the same emotional support as any other person diagnosed with any other terminal illness, which is what dementia is.
The experience of living with dementia brings with it a host of negative experiences. People feel ashamed of being diagnosed with dementia, and we often lose close friends and family members. We experience stigma, discrimination, isolation and more often than not, less than optimal care. We face the many myths and barriers to being able to live as well as possible, for as long as possible. Dementia is not a mental illness, you cannot catch it, and being diagnosed with one of almost 200 types of dementias is not our fault.
Alzheimer’s Disease International, the peak global body for people with dementia and their families, has a Global Charter, I can live well with dementia, and yet, there is still very little to support us with that Global Charter.
Dementia is a global issue, but it is very much a woman’s issue, as Cassandra Szoeke, who is the author of the vascular cognitive disorders chapter in the Textbook of Alzheimer’s Disease and Dementias discusses below in more detail.
More women than men are diagnosed with dementia each year. Whilst people used to think that this was because men died of other diseases and it was just that there were more older women, in fact we now know that even controlling for age women are more likely to get dementia than men. They they are also more likely to get more severe disease and have a more rapid decline than men.
An important factor influencing our health and our mental health as we age are vascular risks. These are things like high blood pressure, high cholesterol, being overweight, diabetes and smoking. We know that vascular risk factors make us more likely to have brain disease, and if you have dementia vascular disease makes your symptoms and progression worse, important given dementia is a terminal disease. Vascular disease in women is quite significant, yet many of us are unaware that heart disease affects women as well as men. In fact for many years now more women than men have been diagnosed with vascular diseases like heart disease and strokes.
The leading causes of death in women in Australia are from cardiovascular disease and dementia.
These are connected yet we just don’t know enough about diseases in women. There are more studies on heart disease and dementia in men than in women with much earlier research not even including women. In the last few decades most studies have been on both men and women, but very few look at factors which may affect disease in women, but not men and vice versa. For example in heart disease more work has been done than in dementia and they have found that women have different symptoms and even type of disease from men. That of course means that medical treatment of disease is different for men and for women. Both locally and internationally programs informing women about risks and symptoms have been introduced, In the USA these programs were introduced in the late 90s and were extremely successful a reduction in deaths seen by 2003-2004! We hope the local Australian program will be similarly successful.
For dementia there is a big impact from vascular risk, and indication are that hormones and inflammation are very important in determining whether or not you get disease. All three of these are dramatically different in women compared to men. Therefore specific work needs to be done to look at the causes of disease in women.
There are some things you can do;
- Healthy diet
- Physical activity
- Healthy weight
- Keeping a good check on your blood pressure, cholesterol and blood sugar
- Keep your brain active
A recent Lancet Neurology paper reported that adoption of these things known to be associated with dementia may well “halve the cases of dementia” I would certainly like to see that happen!
The overall aim of this article is to raise awareness that we should continue to hope that we will find a cure to treat dementia but after many millions of dollars on this research we still do not have cure.
Thus we believe, the focus needs to be on prevention of dementia, and on improving the care and lives of the 46.8 million people around the world currently diagnosed with a disease.
Authors: Michelle Harris, Dementia Consultant, Bethanie Group WA, Assoc Professor Cassandra Szoeke and Kate Swaffer © 2015