Embracing Equity in Dementia: Are we there yet? A Perspective Piece for International Women’s Day

 Embracing Equity in Dementia: Are we there yet? A Perspective Piece for International Women’s Day

Esra Hassan

 

The term equity refers to the acknowledgement that we do not all start from the same place and we should therefore recognise that we must adjust for disparities. It is this year’s theme, embrace equity for International Women’s Day (8^th March 2023) that gives us an opportunity to reflect on the sex and gender disparities that exists in dementia.

 

The number of people living with dementia worldwide is estimated to nearly triple to 153 million by 2050. There is a growing consensus on the need to prioritise dementia as a global women’s health issue given that women are more at risk of developing dementia as well as dementia being a leading cause of death in women. Dementia disproportionally affects women across all regions of the world [1] with over 60% of people living with dementia are women [2].  In the United Kingdom, 15.9% of women had died due to Alzheimer’s Disease and other dementias compared to 8.8% men in 2019 (England and Wales Mortality statics of registered deaths). To put this in perspective, compared to other leading diseases in women, women over the age of 60 are twice as likely to develop Alzheimer’s Disease than they are breast cancer. Yet, research data on women seems somewhat scant. Whilst we see this trend across several other diseases, since women are most affected by dementia, it seems insufficient that they are not adequately represented in several research findings. Tackling this entails fixing systemic issues which is by no means a simple or quick task [3].

 

So why are women more at risk of dementia?

 

The incidence of Alzheimer’s disease occurs more often in women than men whereas we do not see this as the case in other dementias such as vascular dementia or Lewy Body dementia. This means the likelihood of developing Alzheimer’s disease later in life are greater if you are a woman compared to a man. For example, in 16,926 people in Sweden, researchers found that at around the age of 80, a diagnosis of Alzheimer’s disease was more likely for women than men the same age. A study in Taiwan similarly found the chance of developing Alzheimer’s disease over a seven-year period was greater in women than men. The incidence of Alzheimer’s disease in Europe is about 13 women out of 1000 a year compared to seven men out of 1000 a year. However, this sex difference is only found in Alzheimer’s disease which suggests there may be a specific interaction between sex and Alzheimer’s disease [4].

 

One potential reason why there may be a greater prevalence of dementia in women is that women tend to live longer than men. With the greatest risk factor for Alzheimer’s disease being age, it is more likely that an individual develops Alzheimer’s disease the older they are. Other potential reasons include hormonal changes [2], differences in the effects of high blood pressure as well as a potential relation to the effects of menopause [5]. From a genetic standpoint, the APOE-ε4 gene (a major genetic risk factor for Alzheimer’s disease), is a greater genetic risk factor for women [6].  In one study involving 7485 20-70-year-olds over a 12-year period examining dementia risk factors and episodic memory, APOE-ε4 and vascular risk factors were associated with memory decline for women in midlife. Depression was also associated with memory change in older adults and midlife hypertension was associated with greater memory decline in women.

 

In brain scans, we see brain cells die in the brain faster in women. Some studies have been able to demonstrate that the hormone oestrogen may protect brain cells. This has led to some researchers suggesting that women who have more oestrogen throughout their life span may be less likely to develop dementia [7]. Given the potential role of oestrogen, hormone replacement therapy (HRT) has recently been given some attention since HRT increases the level of oestrogen. This leads us to suspect the potential benefits of HRT in preventing Alzheimer’s disease in women. About a quarter of women in the UK alone carry the gene APOE-ε4. HRT may reduce the risk of Alzheimer’s disease in women who are carriers of this particular gene. There is currently an uncertainty as to whether HRT will cut the risk in women but the acknowledgment and investigation into HRT and dementia risk in women is vital given the limited drug options for the dementias. The reasons as to why HRT may be useful is its role in helping control symptoms of menopause, has been associated with better memory, larger brain volume and better cognitive function in later life in women who have the APOE-ε4 gene. It is probable that a combination of risk factors may explain the sex differences in dementia risk. Research is moving in the right direction to carry out an intervention trial to confirm the impact of starting HRT early on brain heath. By taking into consideration a woman’s genetic status for dementia risk, a more personalised approach towards HRT use in postmenopausal women in future interventional studies will be welcomed [8].

 

Sex and gender disparities in clinical trials, diagnostics and therapeutic response

Clinicians are likely to encounter sex and gender disparities in diagnosis of dementia. As the clinical course of Alzheimer’s disease is accelerated in women, this may explain why women perform better than men on verbal memory tests used in diagnosing the condition. This is particularly relevant to the preclinical stage of Alzheimer’s disease which is known as mild cognitive impairment. This may well contribute to the delayed or missed Alzheimer’s disease diagnosis in women. Researchers are working on addressing diagnostic errors by focusing on precision medicine and biomarker detection to help provide a more accurate and early diagnosis.

 

In terms of the sex differences in clinical response to medications, these are not reported as frequently as they could be with reviews on the current evidence providing a mixture of evidence on the efficacy of medications. Women are less likely to receive the therapeutic dose and are also more likely to use drugs with negative cognitive effects compared to men [5]. A balance of male and female data in dementia research is important to compare the differences that occur in response to drug treatments. Yet, with women only included in clinical trials since 1993 [3], we still do not know much more than we did then about how males and females respond differently to drug treatments [7]. If we consider why women are potentially underrepresented in trial data, women are at a disadvantage compared to men due to their likelihood of having a greater number of multiple health conditions that make them less likely to be eligible for trials. This is because clinical trials typically do not recruit people with other medical conditions due to the justified worry about how this may affect the interpretation of results and safety for the participant [8]. Despite the knowledge about sex and gender differences, having adequate numbers of females and males to allow for sex and gender-based analysis in clinical trials as well as a lack of examination of underlying causes of important sex and gender findings is still sparse [9]. Systemic failure to acknowledge sex and gender differences in health interventions can at best be a less effective treatment for women and at worst be harmful for their wellbeing [8].

 

Women and ethnic disparities in dementia

 

Non-white women are underrepresented in clinical research which make them an even rarer demographic in research studies [8]. The Centres for Disease Control and Prevention (CDC) found women and Black people across 3.2 million individuals had the highest prevalence of Alzheimer’s disease in 2014 [8]. However, in the US for example, 35% of Black people are less likely to be given a diagnosis compared to white participants despite being twice as likely to have Alzheimer’s disease [8] and 80% of surveyed Black people reported experiencing barriers to healthcare for Alzheimer’s disease and related dementias. This delays the time-sensitive treatment necessary for a progressive disease. Older (over 65 years old) Black women are disproportionately at a higher risk and yet there are inequalities in getting clinical diagnosis and treatment for their condition. Specific barriers to accessing care include healthcare prejudice and other societal and economic factors. Lack of culturally relevant care and systemic racism are part of the picture with only 20% of surveyed Black Americans stating they felt they had no barriers to quality healthcare for Alzheimer’s disease and related dementias [2]. Black people are also less likely to seek healthcare when experiencing memory problems than White people and this avoidance can be attributed to lack of community educational outreach efforts on providing culturally relevant resources and dementia awareness, historical mistrust of the medical community due to systemic racism and long-standing discrimination from medical institutions. This is supported with 63% of Black Americans feeling medical research is biased against people of colour [2]. The findings support that there is possible under diagnosis in these particular groups and the disparities in patient treatment for modifiable risk factors may contribute to increased incidence for Black Women [10]. It is also important to acknowledge that research still needs to catch up with examining different ethnic groups. Lumping several ethnic groups under an umbrella term is likely to over simplify the potential genetic risks at play and cultural differences relevant to dementia care.

 

Disparities in women caregivers and the care workforce

 

Not only are women more likely to have Alzheimer’s disease, statistics show that the responsibilities for caring for someone with dementia are also women. There is a general cultural expectation across the world that women will take on the caregiving roles. Caregivers are more at risk of physical and mental health issues such as depression and fatigue and given the greater number of female caregivers across the world, this is likely to impact their health and wellbeing. The financial impact on family caregivers are also substantial with many women having to reduce their full-time employment to part time or leave the workforce altogether [1]. According to Alzheimer’s Research UK [3], 20% of female carers went from full time to part time employment as a result of caring responsibilities with 17% stating that they felt they were penalised as a result of their caregiving duties. The formal care workforce is also made up of mostly women [1].

 

Women are also more likely to find themselves providing unpaid care for a loved one with the condition. Studies have shown that 60-70% of caregivers for people living with dementia are women and many caregiving women are older than 65 which adds to the difficulty of caregiving [11].There is a notable increase in uptake of men in caregiving roles. For example, in Canada and the US, 40% of caregivers are men. Women are generally experiencing higher caregiver burden when caring for a person with dementia compared to male caregivers however and this may be due to women reporting higher emotional distress and poorer physical health than men. It is important to consider that men may well have a similar caregiver burden to women but men are more likely to conceal their perceived caregiver strain due to societal expectations on men [12].

 

In terms of the care workforce, women make up the largest number of professional care in dementia (over 70%) with the care home workforce predominantly female. Disparities in the sector include low financial reward and status and the gender pay gap for people working within the health and social care sector [8] means women are earning 10% lower than men in a similar role for median hourly pay. In lower middle-income countries, these statistics are underreported. The COVID-19 pandemic has also disproportionately impacted women health care workers. Since women comprise of 70% of the global health and social care workforce, women were at greater risk of infection and of physical and mental health issues associated with their role in the context of a pandemic [13].

 

So, if we ask ourselves, are we there yet with reaching equity in dementia? The answer is not quite yet. There are several disparities that continue to exist. Individual differences within gender should also be considered, although at present there is very limited data on this. There are great strides being made by dementia charity organizations and dementia researchers to hold government accountable to sought for crucial funding that help us address these disparities and also help piece together the puzzle.

Author: Esra Hassan, BSc (Hons), MSc, GMBPsS

Alzheimer’s Society UK funded Year 2 PhD at Brighton and Sussex Medical School, Centre for Dementia Studies, Department of Neuroscience.

References

[1] Alzheimer’s Disease International (2015). Women and Dementia. A global research review. https://www.alzint.org/resource/women-and-dementia-a-global-research-review/

[2] Alzheimer’s Association. Women and Alzheimer’s disease. https://www.alz.org/alzheimers-dementia/what-is-alzheimers/women-and-alzheimer-s

[3] Alzheimer’s Research UK. Why women are bearing more of the impact of dementia (2022 blog). https://www.alzheimersresearchuk.org/blog/why-women-are-bearing-more-of-the-impact-of-dementia/

[4] Derreberry, T. M., & Holroyd, S. (2019). Dementia in women. Medical Clinics, 103(4), 713-721.

[5] Mauvais-Jarvis, F., Merz, N. B., Barnes, P. J., Brinton, R. D., Carrero, J. J., DeMeo, D. L., ... & Suzuki, A. (2020). Sex and gender: modifiers of health, disease, and medicine. The Lancet, 396(10250), 565-582.

[6] Pertesi, S., Coughlan, G., Puthusseryppady, V., Morris, E., & Hornberger, M. (2019). Menopause, cognition and dementia–A review. Post reproductive health, 25(4), 200-206.

[7] Alzheimer’s Society. Why is dementia different for women? (Blog 2023).  https://www.alzheimers.org.uk/blog/why-dementia-different-women

[8] Connor, J., Madhavan, S., Mokashi, M., Amanuel, H., Johnson, N. R., Pace, L. E., & Bartz, D. (2020). Health risks and outcomes that disproportionately affect women during the Covid-19 pandemic: A review. Social science & medicine, 266, 113364.

[9] Tierney, M. C., Curtis, A. F., Chertkow, H., & Rylett, R. J. (2017). Integrating sex and gender into neurodegeneration research: A six-component strategy. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 3(4), 660-667.

[10] Findley, C. A., Cox, M. F., Lipson, A. B., Bradley, R., Hascup, K. N., Yuede, C., & Hascup, E. R. (2023). Health disparities in aging: Improving dementia care for Black women. Frontiers in Aging Neuroscience.

[11] Anstey, K. J., Peters, R., Mortby, M. E., Kiely, K. M., Eramudugolla, R., Cherbuin, N., ... & Dixon, R. A. (2021). Association of sex differences in dementia risk factors with sex differences in memory decline in a population-based cohort spanning 20–76 years. Scientific Reports, 11(1), 7710.

[12] Schaffler-Schaden, D., Krutter, S., Seymer, A., Eßl-Maurer, R., Flamm, M., & Osterbrink, J. (2021). Caring for a relative with dementia: Determinants and gender differences of caregiver burden in the rural setting. Brain Sciences, 11(11), 1511.

[13] Mehta, S., Machado, F., Kwizera, A., Papazian, L., Moss, M., Azoulay, É., & Herridge, M. (2021). COVID-19: a heavy toll on health-care workers. The Lancet Respiratory Medicine, 9(3), 226-228.