Alzheimer report 2018 front

About the European Institute of Women’s Health, CLG

Founded in 1996, the European Institute of Women’s Health (EIWH) is a registered charity in Ireland and a non-governmental organisation (NGO) that uses an evidence-based approach to advocate for an equitable, sex and gender-sensitive approach in health policy, research, promotion, treatment and care.

The Institute promotes biomedical and socioeconomic research that addresses sex and gender based differences to ensure access to quality treatment and care for women across their lifespan. The EIWH strives to reduce inequities by drawing policymakers’ attention to the obstacles that women in minority, migrant, refugee and socio-economic disadvantaged groups face.

The Institute’s activities work to empower individuals to play an active part in their own health management.

Note

While the title of this Position Paper is ‘Women and dementia in Europe’, specifc attention is being paid to women and Alzheimer’s disease (AD). Broadly speaking, the words ‘dementia’ and ‘AD’ are often interchanged in awareness, advocacy and policy development at European level. At the end of the day, dementia and AD awareness-raising and policy initiatives aim at beneftting the whole dementia community.

As AD predominantly affects women, as patients and carers, the EIWH is taking the lead in bringing the specifcities of women and AD into the European policy arena.  In the absence of any signifcant attention being paid to women and AD in Europe, this Position Paper is the frst step towards a more structured European initiative tackling the challenges of women and AD.

The Position Paper will present the prevalence of dementia in Europe and its socio economic impact, accompanied by more details on women and dementia (incidence and prevalence, women’s experience with dementia, women as carers). The Paper will also look at how the European Union in general and Member States in particular are addressing the dementia challenge (EU research, EU policy). This will be completed by a presentation of the global response on dementia. Finally, based on the Position Paper fndings, some policy recommendations will be made to support the EIWH

Authors

Dr Olga Cleary
Peggy Maguire (European Institute of Women’s Health)
Annette Dumas (EIWH Women and Alzheimer Advisory Council)
Teresa Keating

Expert Review

Dr.Maria Teresa Ferretti, Dr.Annemarie Schumacher, Antonella Santuccione – Women Brain Project
Dr Mercè Boada – Fundació ACE
Dr Charles Scerri – Malta Alzheimer Society
Rosario Zincke dos Reis – Alzheimer Portugal
Donna Chadwick –Young Dementia UK
Frédéric Destrebecq – European Brain Council
Stecy Yghemonos – Eurocarers

Published : December 2018
ISBN 978-1-5272-3253-2

Tnis report can be downloaded from here –  Final_alzheimer_2019


Contents

Foreword           1
Executive summary        2
Introduction          3
The prevalence of dementia in Europe             4
Socio-economic impact of dementia in Europe        7
Women have greater frequency and prevalence of dementia in Europe         8
Sex, gender and risk of dementia        9
Dementia is experienced differently between men and women        10
Europe’s women carry the dementia care burden        11
Research to reduce the dementia burden in Europe    14
Women are still the hidden face of dementia in Europe     16
EU policy on dementia         18
The global response to dementia      19
The way forward     21
Policy recommendations        23
References    25

                                                                                                        


 

Foreward

Vytenis Andriukaitis
European Commissioner
for Health & Food Safety

As our population grows older and lives longer, dementia, in its many forms, is quickly becoming a public health challenge. In 2015,there were an estimated 9.6 million people living with dementia in the EU, or almost 1 in every 50 people.1 It is important to note that the majority of those suffering from dementia are women. In the UK, for example, women make up 61% of dementia patients. In fact, dementia has become the leading cause of death for women in the UK. 2

What makes this progressive disease particularly devastating is the way it affects not only the lives of the patients themselves, but everyone around them – carers, family members and society as a whole. Furthermore, it is women who bear most of the responsibility of caring for dementia sufferers, be they family members or health care professionals.

A recent study of family care patterns in fve EU countries carried out by Alzheimer Europe found that 82.8% of carers were women.3 This is why dementia is also an economic burden on women.

We must address dementia through a multi-sectoral approach, in order to help the sufferers and their families cope both emotionally and fnancially.

The European Commission remains committed to this goal, through leadership and fnancial support for national and international programmes, as well as research and development.

I hope that your position paper will accelerate the efforts to fnd better solutions for dementia, particularly for women suffering from this disease and those who might be struggling with caring for
a sick relative.4

Foreward References

1. Health at a Glance: Europe 2016, https://ec.europa.eu/health/state/glance_en

2. Alzheimer’s research UK: Women and Dementia; A Marginalised Majority,
https://www.alzheimersresearchuk.org/wp-content/uploads/2015/03/Women-and-Dementia-A-Marginalised-Majority1.pdf

3. International Journal of Geriatric Psychiatry, https://onlinelibrary.wiley.com/doi/epdf/10.1002/gps.4997

4. https://webgate.ec.europa.eu/chafea_pdb/health/projects/20102201/summary


Executive Summary

Dementia is the greatest global and societal challenge for health and social care in the 21st century. It is predicted to overtake cardiovascular diseases as the leading cause of mortality worldwide in the near future. It is the only condition in the top 10 causes of death without a treatment to prevent, cure or slow its progression.

Dementia signifcantly compromises quality of life for the individuals affected, their carers and their families. It is the greatest cause of disability and dependency in later life and has a disproportionate impact on capacity for independent living compared to any other chronic disease.

In Europe, the number of people with dementia is estimated to increase from 10.5 million in 2015 to 18.7 million in 2050. Women are at the epicentre of the Alzheimer’s crisis with close to 6 million women having dementia in the EU. Research suggests that prevalence rates may be much higher due to widespread under diagnosis.

The economic impact of dementia in Europe is substantial. Direct healthcare costs are putting European health systems under severe pressure. Indirect costs of caring for people with dementia place an unsustainable economic burden on families and carers. Costs are likely to increase signifcantly due to a combination of greater prevalence and less care being provided by families.

Dementia disproportionately affects women. More women than men develop dementia, live with dementia and die from dementia. Two-thirds of individuals diagnosed with Alzheimer’s disease (AD) are women. While longer life expectancy does play a role, it does not appear to fully explain the greater prevalence. Differences in biology and exposure to gendered environmental risk and protective factors across the lifespan may also affect likelihood of developing dementia.

Research indicates that women experience more pronounced symptoms of dementia compared with men and the disease may progress faster in women. They also show more concern about a dementia diagnosis, and are less likely to access and receive health and social care support following a diagnosis. Women also face more economic and social disadvantages than men in later life and are more likely to be fnancially dependent
on their partner. Furthermore, the vast majority of carers for people with dementia are women both in formal and informal capacities. Women experience the strain of caring for family members with dementia
more acutely and are more likely than men to give up paid employment in order to fulfl their caring roles, further compounding existing social and economic disadvantage for women carers.

Women carers experience more profound physical and mental health issues. It is expected that the impact of dementia will continue to be greater for women than men in the coming decades, both in terms of the burden of disease, risk of mortality and the burden of care.

Dementia risk can be modifed at different stages in the life-course with the strongest evidence for improved education in early life, reduced hypertension and obesity in midlife and reduced diabetes and smoking and improved physical activity. Adopting a brain healthy lifestyle could potentially reduce the prevalence of dementia in Europe by 20% per decade.

The prevalence of dementia and its associated costs may be modifed substantially by population health approaches which (1) target lifestyle behaviours and socio-economic factors to lower dementia incidence, (2) improve and increase interventions to modify dementia progression and (3) develop treatment and care management approaches that improve the experience of people living with dementia and prolong their survival.

There is currently limited reference to sex and gender differences in dementia in national strategies across Europe. Awareness and understanding of dementia across society must be improved, taking into consideration the specifcities of women as both patients and caregivers.

There is an urgent need to address differences between men and women in symptoms and neuropathology by analysing and stratifying clinical data by age and sex.

Policy makers and governments have the power to address the dementia challenge. They must develop new approaches to better understand the development of the disease, identify new approaches to prevent, diagnose and treat the disease, dedicate meaningful funds to research, provide the necessary support to people with the disease and their carers. All initiatives and measures must evolve around a sex and gender axis.


Introduction

Dementia is the greatest global and societal challenge for health and social care in the 21st century. In 2018, 50 million people worldwide were living with dementia. With the ageing of the population, it is estimated that this number will more than triple by 2050 with 152 million being affected by the disease.1  According to Alzheimer’s Disease International (ADI), there will be one new case of dementia around the world every three seconds.

Dementia is the most common neurological disorder in old age contributing to 11.9 years lived with disability in individuals aged 60 years and over.2

Contrary to popular belief, dementia is not a natural or inevitable consequence of ageing. Dementia is a group of neurodegenerative syndromes that progressively lead to brain damage and gradual deterioration of an individual’s capacity to function autonomously. It is characterised by a decline in memory, language, problem solving or other cognitive skills that affects a person’s ability to perform everyday activities, compromising their ability to live independently.3 Alzheimer’s disease (AD), a slow progressive brain disease, is the most common type of dementia, estimated to account for 60% to 80% of all dementia cases.4 Most patients with AD (>95%) present with the sporadic form which is characterized by a late onset (80–90 years of age). It is believed to be caused by the failure to clear the amyloid-β peptide from the interstices of the brain. A small proportion of patients (<1%) have inherited mutations in genes that affect the synthesis of Aβ and develop the disease at a much younger age (mean age of ~45 years,5 familial AD). Other dementias include vascular dementia, Lewy Body, frontotemporal dementia, alcohol-associated dementia, Creutzfeldt-Jakob disease and Huntington’s disease.

It is estimated that dementia will overtake cardiovascular diseases to become the leading cause of mortality world-wide in the near future.6

It is the only condition in the top 10 causes of death without a treatment to prevent, cure or slow its progression.7 For instance, fgures from the Offce for National Statistics in the UK show that dementia is the most common cause of death in England and Wales. The fgures show that just over 60,000 people died due to dementia in 2015, which is slightly more than the number of deaths caused by coronary heart disease.8,9,10

The personal, economic and social consequences of dementia are huge.   The disease signifcantly compromises quality of life for the individuals affected, their carers and families. It is the greatest cause of disability and dependency in later life 11 and  has a disproportionate  impact on capacity  for independent living compared to any other chronic disease. Symptoms of dementia and the additional risk of complications from comorbid conditions may compromise a person’s ability to maintain health and self-manage their care. In dementia patients with multiple conditions, dementia can often become the dominant clinical condition and this can lead to poor management of additional conditions and poorer outcomes.12


The prevalence of
dementia in Europe

It is already clear that population growth and the ageing of the population have impacted on the numbers of Europeans  living with dementia.  The number  of  people with  dementia is  expected  to continue rising in Europe to 13.4 million in 2030 and 18.7 million in 2050.13 With 7.5 million dementia cases, Western Europe currently has the second highest proportion of people living with dementia over the total population (so called ‘prevalence’) by WHO GBD world region.14

ADI  estimates that  this  will double by  2050 to  14.3  million  people with dementia living  in Western Europe (Table 1).15 Central Europe (1.1 million) and Eastern Europe (1.9 million) have comparatively lower numbers of people living with dementia (so called ‘frequency’), although ADI estimates a rise in both regions, albeit at a lower rate compared to Western Europe. It is expected that Western Europe will see a 92% increase in prevalence by 2050 compared to 78% for Central Europe and 26% for Eastern Europe

Latest fgures from OECD also recognise that much about dementia remains unknown despite the fact that its prevalence rises rapidly with age. The publication states that 2% of people between 65-69 live with dementia, while the fgure rises to 90% for those aged over 90. As shown in Figure 1, the ageing of the population will exacerbate the situation.16

The current and projected prevalence rates of dementia are underestimated as AD and other dementias are substantially under diagnosed in the EU. The European Brain Council ‘Value of Treatment’ 17 project highlights that approximately half of people living with dementia in Europe have never been diagnosed and for those who have been diagnosed it was most likely diagnosed at a moderate stage.18,19 A recent systematic review estimated the pooled rate of undetected dementia to be 61.7%.20

Dementia risk is determined by a complex interaction of modifable and non-modifable factors. Non-modifable factors include age, sex, learning disabilities and genetics. Cardiovascular morbidities such as high blood pressure, hypercholesterolaemia, diabetes and obesity are major risk factors, as is stroke. Conversely, active engagement in mental, physical and social activities may delay the onset of the most common forms of dementia.

Dementia is clearly age-related with incidence (number of new cases) doubling every 6.3 years. Dementia incidence peaks between age 80 and 89 years in Western and Central Europe and slightly earlier in Eastern Europe between ages 70 to 79 years (Figure 2).21

While ageing is the single, strongest risk factor for dementia,22 younger people can also be affected. ‘Young onset dementia’ (YOD) affects people of working age, usually between 30 and 65 years old. Population-based studies on the epidemiology of YOD are limited and there is conflicting information about the prevalence of YOD. In the UK alone, over 42,000 people are living with YOD.23 It takes on average 4.4 years for younger people to be diagnosed.24 This is twice as long as older people, thus delaying access to treatment and support. Younger people experience a variety of symptoms different from those which are typically linked to dementias in people over 65 years old. Changes in behaviour/mood/perception and balance are common, especially with fronto-temporal dementia, posterior cortical atrophy, and Lewy Body dementia. Many younger people are misdiagnosed with depression, anxiety, stress, marital issues, menopause or personality disorder. In the absence of memory problems, these symptoms can be missed. As an example, Young Dementia UK has recently published a Guide ‘Diagnosing dementia in younger people – A decision-making guide for GPs’25 to educate them about some of the symptoms that a young patient may present with. This Guide has been endorsed by the Royal College of General Practitioners.

Table 1.

Current and projected estimates of prevalence and frequency of dementia in EuropeTable 1

Figure 1. Dementia prevalence – People with dementia per 1000 population (all ages)

The low levels of awareness about the disease and the diffculties of diagnosing the condition at workingage mean popularly used statistics are likely to be inaccurate and do not reflect the true number of people who are affected.   However, studies indicate that AD is the most common form of dementia in younger people (around 4% – 5% of people with AD are under 65).26,27 Harvey and colleague 28 estimated that, in two London boroughs in the UK, AD was the most common single diagnosis of dementia in people younger than 65, followed by vascular disease, frontotemporal dementia and alcohol dementia. Most of the young onset AD cases are due to genetic defects; either familial AD mutations, or triplication of the APP gene in Down’s Syndrome. Individuals affected by Down’s syndrome in fact invariably present AD neuropathology and are at markedly higher risk of YOD: 10-30% of people aged 40-49 and 30-75% aged 60-69 are likely to develop dementia,29 which is due to Alzheimer pathology.30 

YOD carries a higher mortality risk compared to late onset dementia.31,32 It is more prevalent than previously thought33 and its prevalence is increasing.34 It is estimated that YOD may account for between 6 to 9% of all dementia cases.35

People with YOD face specifc challenges: early symptoms of dementia are often dismissed and the diagnostic process is compounded by the idea that the person is likely to be ‘too young’ to develop dementia. The symptoms are similar to those of older people with dementia but the impact on their lives is much greater: these people are more likely to still be working when they are diagnosed, have signifcant fnancial commitments, children to care for and dependent parents.

Figure 2. Estimated age-specifc annual incidence of dementia, derived from Poisson random effects models, for world regions for which meta-analytical synthesis was feasible


Socio-economic impact of
dementia in Europe

According to OECD, dementia is already the second largest cause of disability for the over 70s and costs societies more than half a trillion US dollar every year globally. Ageing populations will increase these costs.36

The European Commission (Economic and Financial DG) projects an increase in the old-age dependency ratio (people aged 65 and above relative to those aged 15 to 64) in the EU during the period 2016- 2070. This implies that the EU would go from having 3.3 working-age people for every person aged over 65 years to only 2 working-age persons. Most of this increase is driven by the very old-age dependency ratio (people aged 80 and above relative to those aged 15-64), rising from 8.3% to 22.3% between 2016 and 2070.37

The societal and economic impact of dementia in Europe is substantial including direct medical and social care costs as well as signifcant informal care contributions.38 Direct healthcare costs such as doctor visits,  hospital admissions and medication are putting. European health systems under severe pressure and the indirect costs of caring for people with dementia place an unsustainable economic burden on families and carers.39 Out of pocket costs for dementia care contribute signifcantly to the burden of the disease on the individual affected and their carers and families. In all European countries it is estimated that one half of the overall costs of dementia are indirect costs borne by carers and families.

The cost of dementia in Europe is becoming progressively onerous due to the increase in the proportion of the overall population with the disease. ADI estimates that Western Europe accounts for the greatest cost of dementia in Europe, explained by greater prevalence but also by the greater cost of care provision compared to other European regions (Table 2).40 Wimo et al 41 estimated the per person cost of dementia in Europe to be €22,000 per year. The overall cost of caring for dementia in Europe is likely to rise in future years due to a rapid increase in the per person cost of dementia in Eastern Europe.

The spiralling cost of care against a backdrop of fiscal challenges in Europe in the last decade is expected to put European economies under substantial pressure in the coming years. 42  Spending  on prevention  accounted for only  3%  of all expenditure on health
in 2010 in OECD EU countries.43 Demographic ageing as well as recent changes in society (e.g. migration, declining fertility, higher levels of education, motherhood in older age, changing family structure, increased participation of women in the labour force, etc.) are draining the potential pool of carers which – given the important role played by carers in Europe – will put more and more pressure on them.44 Adopting a public health approach to reduce the prevalence of dementia as advocated by the WHO, ADI and the Blackfriars Consensus 45 provides many opportunities to ‘invest to save’. WHO advocates sustained action and coordination across multiple levels and with all stakeholders at international, national, regional and local levels.


Women have greater
frequency and prevalence
of dementia in Europe

Women are at the epicentre of the Alzheimer’s crisis. In the EU, Alzheimer Europe estimates that close to 6 million women have dementia. 

The strikingly higher frequency of AD amongst women is observable in each EU28 country, as reported in Table 3.46 This is a global trend: according to the Alzheimer’s Association’s report ‘Alzheimer’s Disease Facts and Figures’, almost two-thirds of American seniors living with AD are women. Among those aged 71 and older, 16% of women have AD and other dementias, compared with 11% of men. Life expectancy in the EU is on the rise, increasing by 3 months on average each year 47 and a greater degree of population ageing is expected for women. The proportion of women aged over 75 is expected to double by 2060 (from 5.5% to more than 10% of the total population).48 Given these trends and the strong impact of ageing on dementia risk, it is projected that the numbers of older women with dementia will increase substantially in the coming decades.

Whether women are universally at higher risk of AD is not fully elucidated.49 However, several lines of research indicate that older women might be at higher risk than men, and this especially in Western Europe. According to ADI, the prevalence of dementia is related to age in all world regions. However, while in the United States prevalence did not seem to be affected by sex, a clear trend for higher prevalence in women is observed in Europe. This trend reached signifcance in Western Europe.

The higher prevalence of AD in women is consistently observed in older age brackets. Since prevalence data refer to the number of AD women patients over the total number of women of the same age, higher life expectancy in women is taken into account in this data and does not explain the sex effect observed. It has been suggested, however, that higher prevalence of dementia in older women as compared to older men might be due to the phenomenon of ‘selective survival’. According to this hypothesis, generated in the US, men tend to die earlier in life of cardiovascular events, hence the ‘survivors’ have a healthier cardiovascular risk profle than women of the same age and are therefore protected from dementia at older ages.50 If this was confrmed, it might indicate that older men and women present different comorbidities and risk factors for dementia, a crucial notion for effective preventative strategies. However, this hypothesis remains to be tested in European cohorts.

Table 3. The frequency of dementia in Europe (EU-28) according to sex


Sex, gender and risk of
dementia

Evidence indicates that both sex and gender might modulate dementia risk across the life span. Biological as well as gendered experiences across the life-course have been shown to modify brain health and dementia risk. The Women Brain Project and Alzheimer’s Disease Precision Medicine Initiative recent review of the scientifc literature clearly demonstrates that sex and gender differences are indeed of very high relevance for diagnosis and treatment of AD.51

For example, exposure to adversity and educational opportunities in early life and health behaviours throughout the life course are thought to be differentially influencing dementia risk for men and women.52 Education and employment are important dementia risk factors that differ across genders. The crucial impact of education in AD has been recently highlighted by the study of Satizabal et al., reporting that high-school-level education signifcantly correlated with reduced incidence of dementia (including AD) over three decades in the Framingham heart study.53 In AD studies, women show consistently lower education levels than men. However, the specifc interaction between sex, gender and education in dementia risk has not been properly studied.

In terms of biological risk factors, several of them have been shown to affect men and women differently. While APOE4 is a prominent risk factor for both men and women, a recent study demonstrated that women with the APOE 3ε /ε4 genotype have an increased risk at younger ages to develop AD than men.54 Evidence suggests that vascular factors might differentially regulate risk of AD according to sex. In population-based studies conducted in Finland, history of late-life vascular diseases signifcantly associated with Alzheimer’s  dementia in women but not in men. 55 More recently, sex-specifc effects were
reported between vascular risk factors and dementia onset with overweight and physical activity being respectively harmful and protective, specifcally in women.

A recent study in the population-based Mayo Clinic Study of Ageing identifed sex-specifc risk scores in the short-term conversion (median 5 years) from normal cognition to mild cognitive impairment (MCI). Smoking, midlife dyslipidaemia, diabetes and hypertension were specifc predictors for MCI conversion in women. Obesity and marital status were specifc to men, while stroke, atrial fibrillation, history of alcohol abuse, education and self-reported memory concerns were confrmed AD predictors in both men and women.56 

A recent meta-analysis revealed that individuals with sleep problems have higher risk for AD dementia.57 Epidemiologically, sex-differences in sleep disorders have been reported with women 40% more likely to develop insomnia, as well as more prone to restless leg syndrome and obstructive sleep apnoea.58 The specifc interaction between sex and sleep in conferring risk to AD has to be yet characterised.

An emerging risk factor in dementia is depression. The greater the frequency and severity of depressive symptoms, the greater are the risks.59 On average, women have higher rates of depression than men. Depression is also linked to cardiovascular disease, the latter a signifcant risk factor for stroke.60

Late-life depression has a strong correlation with the risk of developing AD.61 Saczynski and colleagues found that the risk of developing dementia, including AD, nearly doubled in participants suffering from depression in the Framingham’s heart study.

Finally, there are women-specifc risk factors for dementia, like pregnancy induced hypertension, and pre-eclampsia.62 Pre-eclampsia has been associated with higher risk for cardiovascular disease 63 and cognitive impairment later in life.64 Hysterectomy and oestrogen loss after menoause may increase risk in women.

Cardiovascular morbidities such as high blood pressure, hypercholesterolaemia, diabetes and obesity are major risk factors, as is stroke. However, active engagement in mental, physical and social activities may delay the onset of the most common forms of dementia.65


Dementia is experienced
differently between men and
women

Women are not only disproportionately affected by AD but they also experience the manifestation and progression of dementia differently. Sex-differences have been reported in rates of progression in MCI patients recruited in the ADNI study, with faster cognitive deterioration in women over a one-year period.66 Women with MCI experience memory declines twice as fast as men.67 Progression of dementia is different between men and women68 and it may be faster in women and individuals with YOD.69 

However, clinical data are rarely stratifed by sex and evidence supporting these reports is required. It has been reported that women experience more pronounced symptoms of dementia compared to men.70 Women have a broader spectrum of dementia related behavioural symptoms with a predominance of depression and delusion,71,72 while aggressive behaviour is more frequently observed in men.73 Older research showed poorer cognitive profles in women compared to men at the same stage of AD in several cognitive domains including language and semantic abilities, visuospatial abilities and episodic memory. These differences could be explained by other factors such as age, education or dementia severity. However, they need to be confrmed in recent studies. Sex-specifc effects may be attributable to a reduction of oestrogen in postmenopausal women, greater cognitive reserve in men, and the influence of the APOE4 allele which increases risk disproportionately in women compared to men during younger age.74

Recent papers suggest that women might be able to mask initial cognitive decline (at the MCI stage), as they are high performers in the neuropsychological test normally used to identify MCI even in the presence of neurodegeneration in their brains. Women show better verbal memory than men in MCI despite similar levels of hippocampal atrophy. If this was confrmed, it might indicate that women are on average diagnosed later than men (as suggested by Pradier et al.).75 Early diagnosis in women might therefore require sex-specifc diagnostic tests.

Women also show more concern about a dementia diagnosis compared to men. In the U.S., 58% of women compared to 43% of men reported being fearful of developing dementia.76 Studies report that this greater fear among women encompasses their loss of identity as primary family caregiver; a role that is reinforced by dominant society norms.77 Social care policies also reinforce this gendered perception of women’s role as the cornerstone of caregiving in the community rather than recipients of care.

Research in Ireland found that female physicians were less likely to diagnose dementia compared to their male counterparts.78 When women are diagnosed with dementia, they are less likely to access health and social care systems compared to men and they experience worse outcomes when they do.79 Women face more economic and social disadvantage than men in later life.

Women are more fnancially dependent on their male partners as a result of gender biased health and social care schemes in Europe. In particular, social insurance schemes which rely on a history of paid employment directly disadvantage women.80 For example, the marriage bar introduced in The Netherlands and Ireland in the 1930’s effectively excluded women from paid employment and is now contributing to the economic marginalisation of women in later life. As a result, women are less likely to be able to afford and access appropriate dementia treatment and care in later life.


Europe’s women carry the
dementia care burden

AD affects a whole family, not just the person. The vast majority of carers for people with dementia are women both in formal and informal capacities.81 According to ADI, women contribute to 71% of the global hours of informal care. The organisation also estimates that the annual global number of informal care hours provided to people with dementia living at home was about 82 billion hours in 2015 (6 hours per day). This is the equivalent of more than 40 million full time workers in 2015, a fgure that will increase to 65 million full time workers by 2030.82

As an example, it is estimated that there are over 50,000 carers of people with dementia in Ireland. The Alzheimer Society of Ireland De-Stress report 83 (2017) indicates that women are far more likely to end up as carers of people with dementia than men experiencing physical and emotional stress in the process. Women are also now two and a half times more likely to become carers of a person with dementia. As spousal carers for someone with dementia, women are less likely to receive caregiving help from family and friends compared to men. Compared to men, women reported signifcantly poorer mental health, quality of life and life satisfaction #

Women experience higher social pressure to provide care to family members as caregiving is still generally regarded as ‘women’s work’.84,85

             In a study of 5,792 people in Spain,

         67.2% of the primary caregivers were women.

        The study also showed that these women feel

            mostly obliged because of gender or kinship.86

Caregiver burden is the term used to describe the broad range of stress experienced as a direct result of caregiving. It is associated with profound impacts on the carers’ physical and psychological wellbeing. 87,88,89 Women experience the strain of caring for family members with dementia more acutely,90 reporting higher levels of stress, depression and anxiety symptoms as well as lower levels of quality of Women experience the strain of caring for family members with dementia more acutely, reporting higher levels of stress, depression and anxiety symptoms as well as lower levels of quality of life.91 Also, the women who provide informal care feel overloaded in 30.9% of situations, unlike men (23.6%).92 Elderly women caring for a loved one who has dementia may be particularly susceptible to the negative health effects of caregiving because they receive signifcantly less help from family members for their own disabilities.93 Gender differences in carer burden may partly be explained by the fact that women tend to provide a greater amount and more intense care.

Women provide the bulk of informal care throughout Europe; between 60-70% of all carers are women.94,95 Women are two and a half times more likely than men to provide care when they live with the care recipient96 and a higher percentage of women (39%) than men (33%) feel they had no choice in becoming a primary caregiver for a family member. Women also generally provide more care in their caring role compared to men. Female caregivers may spend as much as 50% more time providing care than male caregivers.97,98 Almost one ffth of all caregivers are ‘on duty’ as carers 24 hours, 7 days a week. These full-time carers are much more likely to be female; 2.5 women for every male caregiver live with their care recipient and provide care 24/7.99

Wives have been found to be particularly vulnerable to carer burden as they spend much greater time on caring activities compared to men100 : 32.4% of the 67.2% of women who provided care were spouses and 27.6% were daughters. The study shows that in families with sons and daughters, women are on the front line to provide care. Caring for older relatives also minimises a woman’s caring capacity for other family members including children and grandchildren. Daughters carry the greatest burden of multiple care-giving roles, 101 referred to as ‘sandwich generation carers’ they often have to juggle competing demands of caring for parents with dementia as well as dependent children.

Women who provide informal care are at a greater risk of social isolation and fnancial stress102  compared to men. Women are more likely to opt for part-time work in order to care for a family member with dementia compared to men or give up employment to dedicate themselves to their informal caring role. Those who continue to work suffer from reduced earning capacity either as a direct result of cutting back on working hours or through limited career opportunities.103

The negative impacts of informal care on
women’s participation in the labour force
differ noticeably across Europe following
a north-south gradient, more pronounced
in the south of Europe
.104,105

Reduced earning capacity coupled with increased out-of-pocket medical expenditure may leave carers particularly vulnerable. Although many countries provide a carer’s allowance, this often falls short. Access to adequate social care is often limited and carers report diffculties understanding their health and social care entitlements and navigating through bureaucracy to avail of these. Besides, it is shown that women stay without a caregiver until late phases of the disease, unlike men who need it sooner. This adds to the overall stress of caregiving and compounds existing socio-economic differences between men and women.

Caregiver coping strategies vary by gender. Men are more likely to focus on problem solving, accomplishing tasks and making sense of their experiences at a cognitive level while women focus on the quality of their care giving and emotional support. Research also shows a gender imbalance in the take-up of informal support for family caregivers. Women who care for relatives with dementia are less likely to avail of support from family and friends compared to men.106 Women are more reluctant to accept support and place a burden on services or remove services from others in need while men are more comfortable accepting support to enhance their ability to care for their relative.107

As with informal care, the majority of formal paid care for people with dementia is provided by women, accounting for between 85% and 87% of the workforce.109, 110,111  Formal care is often provided by women under challenging circumstances in care homes including high workloads, time pressure, and lack of support from employers for low paid, low status jobs often with short term contracts.112 This leads to emotional and physical exhaustion among formal care staff. Formal care is also associated to a high rate of turnover in an area where continuity is important.  There is also a well-documented gender pay gap within health and social care services with women earning 10.1% less than their male counterparts in similar roles.113

There are important differences in levels of formal and informal care provision across Europe. Northern and Western Europe have greater provision of formal care supports compared to Southern Europe and in particular Eastern European countries where they rely almost entirely on informal care.114 The current institutional arrangements for the provision and financing of long-term care may be under strong pressure in the future if the availability of informal carers and their propensity to provide care diminish. The impact is nevertheless uncertain and depends on whether informal and home care are complements or substitutes. In case of complementarity, a decreasing supply of informal carers will reduce the demand for home care, increasing the demand for residential care. This is because a lack of informal carers will force dependents to move to institutional care. If informal care is a substitute for formal home care, a shortage of informal carers could lead to an increase in demand for home care. Recent evidence from a group of EU countries suggests that informal care and home care are indeed substitutes, although the extent to which this is the case depends on the country.115

Informal carers – and women in particular – will continue to provide the balance of care in systems where formal care is lacking. Ensuring that carers are protected from this burden and its associated hardship is crucial to building sustainable care models for an ageing population with a high proportion of people with dementia

Substantial investments should be
made to recognise and support those
carers who want to care for their dependent
relatives/friends in order to improve the
quality of the care they provide and prevent
the negative outcomes of their caregiving
responsibilities.

In contrast, people who do not want to be involved in the provision of care to their relatives or who only want to play a limited role in these activities should be able to rely on affordable and professional care options, of good quality, in particular home care and community-based services. 116 European economic policy must take account of issues for women tied to caregiver roles and acknowledge the substantial savings accounted for by informal carers. Investment in informal care makes economic sense. Providing job stability and enhanced work environments for formal carers is crucial to develop a competent and skilled dementia care workforce in Europe.


Research to reduce the
dementia burden in Europe

Despite ongoing research, no treatments to delay or cure dementia have been identifed yet. In the absence of a cure, adopting effective strategies to prevent dementia is essential to alleviate the projected increase in dementia prevalence in future generations in Europe. The prevalence of dementia and its associated costs may be modifed substantially by population health approaches which

• target lifestyle behaviours and socioeconomic factors to lower dementia incidence,

• improve and increase interventions to modify dementia progression and

• develop treatment and care management sexand gender-based approaches that improve the
experience of people living with dementia.

We can modify dementia risk at different stages in the life course with the strongest evidence for improved education in early life, reduced hypertension and obesity in midlife and reduced diabetes and smoking and improved physical activity across the life course.117 Addressing these factors could substantially reduce dementia prevalence in later life. Adopting a brain healthy lifestyle which addresses many of these modifable factors can help to build brain reserve, so that cognitive function remains intact for longer.118 One model showed that if these risk factors were modifed in mid-life, up to 3 million cases of dementia might be avoided in Europe. Reducing the prevalence of these factors by 20% per decade would potentially reduce the prevalence of AD in 2050 by 16.9%, that’s 13,727 new cases of dementia that could be prevented.119

Partnerships between academia and investors have produced a number of digital tools/therapeutics that are now being developed and tested to train the brain in order to slow down cognitive decline. Some, like X-TORP120 can be medical devices that measure and evaluate the player’s cognitive functions, stimulate cognitive capacities (through orientation games), encourage physical activity (stimulation of the cardiorespiratory functions) and maintain social bonds (via social interactions between the players themselves and the players with their doctor). One serious game, Sea Hero Quest,121 is a spatial navigation game that was created to help improve early diagnosis of dementia. The data collected creates a global benchmark of spatial navigation in humans. It is considered as the largest dementia study in history. Playing the game 2 minutes is equivalent to 5 hours of scientists’ research in similar lab-based research. Until today, some 3 million people have the game. This game has shown that spatial navigation capacities begin to decline from the age of 19 and that there are fundamental differences in spatial navigation between men and women.

However these devices may not readily be accessible to women. Some barriers create a gender gap in innovation and technology, limited market awareness and investment in innovations that meet the needs of women, the gender-blind approach to innovation, the under-representation of women as innovators and entrepreneurs, and the perceived high risk, low reward profle of investing in innovations for women and girls.122

There is recent evidence of a decrease in dementia incidence associated with marked improvements in dementia risk factors in recent decades including improved early life education and lifestyle factors such as smoking and lower rates of cardiovascular disease.123 Future epidemiological research will confrm if this trend is set to continue which may result in lower numbers of dementia cases in the population than predicted. Nevertheless, dementia will continue to be a major challenge for ageing populations across Europe requiring focused policy approaches. Given the unequal burden of dementia on women, women have more to gain from improvements in dementia risk reduction, treatment and care provision.

Delaying or preventing the onset of AD has the potential to reduce loss of autonomy and disability and to alleviate the economic and social burden associated with the disease. Early detection of individuals at risk of developing the disease offers opportunities to delay the onset and participate in clinical trials. It can also lead to the adoption of life-style changes and self-determination in future planning.

A timely diagnosis, at a time when the person with dementia and their carers will beneft from interventions and support, is a pre-requisite for good dementia care.124 However, a timely diagnosis may be diffcult because of misconceptions such as dementia being a normal part of ageing, denial of the symptoms, stigma, and GP lack of knowledge about dementia or reluctance to diagnose in the absence of treatment. Another major barrier within Europe is the paucity of specialized medical centres where specialised trained mental health professionals can proceed with a precise diagnosis.

AD remains largely underdiagnosed. To redress this defcit, reliable measurements that support earlier and more accurate diagnosis and facilitate the development of new drugs are needed. This has led the Joint Research Centre (the European Commission’s science and knowledge service) to release in December 2017 a new scientifc yardstick, in the form of a certifed reference material, to support early diagnosis of AD. This material will serve to calibrate diagnostic tools for amyloid-β 1-42, a biomarker for AD found in cerebrospinal fluid and presenting a promising potential to be used in early diagnosis.

A number of on-going EU-funded initiatives aim at fnding ways to diagnose, prevent and treat dementia. he EU Joint Programme – Neurodegenerative Disease Research (JPND)125 coordinates global research investments between countries worldwide to identify causes of dementia, develop cures, and ways to better care for those with neurodegenerative diseases.The European Commission research programmes, FP7 and Horizon 2020 have respectively dedicated funds on the pathophysiology, treatment and diagnosis of dementia and neurodegenerative diseases as well as assisted living. In particular, IMI –the European Commission/EFPIA-funded Innovative
Medicines Initiative (IMI) – currently funds EPAD (European Prevention of Alzheimer’s Dementia
consortium),126 MOPEAD (Models Of Patient Engagement for AD),127 ROADMAP (Real world outcomes across the AD spectrum for better care:multi-modal data access platform),128 AMYPAD (Amyloid imaging to prevent AD),129 EMIF (European Medical Information Framework),130 AETIONOMY (Organising mechanistic knowledge about neurodegenerative diseases for the improvement of drug development and therapy).131

The European Health Programme 2014/2020132 helps EU countries respond to economic and demographic challenges facing their health systems and enable citizens to stay healthy for longer. One of the thematic priorities includes ‘support cooperation
and networking in the European Union in relation to preventing and improving the response to chronic diseases including age-related diseases and neurodegenerative diseases’.

On a global level, the EU contributes to the Human Brain Project,133 that harnesses modern ICT to understand the brain and deliver models for human brain functioning.


Women are still the
hidden face of dementia
in Europe

The number of European countries with dementia strategies has grown in recent years in response to calls from the European Institutions as well as European and national Alzheimer associations to ‘come up with specifc national plans and strategies for Alzheimer’s Disease’. Figure 3 illustrates the status of dementia strategies in European countries and highlights a West-East European bias with fewer eastern European countries having adopted strategies.134  While the need to ensure gender equality for health, particularly for older women has been highlighted in a number of international policy developments,135 a recent United Nations review shows very little progress136 and there is little acknowledgement of the disproportionate burden that dementia confers on women.137 Two recent international reports have been published directly addressing the issue of women and dementia. ADI published a report specifcally on Women and Dementia in 2015138 and the Global Alzheimer‘s and Dementia Action Alliance published a report on the Global Challenge of Women and Dementia in 2017.139 Both propose important policy actions required to alleviate the burden of dementia on women

Having reviewed all available European national strategies we found limited reference to gender differences in dementia. While most policies do cite a higher prevalence in women, they fail to recognise the importance of nuancing recommendations on gender specifc actions. Two national dementia strategies detail a more considered approach to gender issues.The Maltese strategy (Empowering Change – A National Strategy for Dementia in the Maltese Islands 2015-2023) does state that it will strive to provide a gender dimension in its implementation plan given the important differences that exist across various aspects of dementia including prevalence and caring.140 The Austrian Dementia Plan (Austrian Dementia Report 2014) provides the most comprehensive coverage of gender issues and extensively considers the disproportionate impact of dementia on women including differences in dementia epidemiology, behaviour, care, and treatment. It recognises the need for a gender sensitive approach to care and treatment for the person living with dementia. As research now highlights that care provision approaches are themselves gendered,141 the strategy proposes the adoption of an appropriate care model for integrating gender sensitive care into dementia care.

In Ireland (The Irish National Dementia Strategy (NDS) 2014) and Northern Ireland (Improving Dementia Services in Northern Ireland: A Regional Strategy 2011) identify that gender is a non-modifable risk factor associated with AD and dementia. According to the NDS, there are currently an estimated 36,650 women living with dementia in Ireland, compared to 18,350 men. Northern Ireland highlight general gender differences in dementia prevalence rates while England’s Equality Impact Assessment of its dementia strategy (2009) makes reference to differences in the incidence of dementia according to gender.

Existing and future national dementia action plans and strategies must recognise and react to the gendered-challenges dementia entails. A review142 of all the national dementia plans and strategies collated by ADI reveals that there are very few gender sensitive responses. There is a need for further research and increased analysis on the gendered nature of dementia in order to plan targeted campaigns for women to increase their understanding of risk, assessment and available resources

EU policy on dementia

Over the years, the three EU institutions (European Commission, European Parliament and the Council of the EU) have recognised dementia as a public health issue and recognised the condition as an area where EU action adds value. The focus on dementia has been promoted by a number of countries holding the EU Presidencies.

The French EU Presidency (2008) effectively kickstarted EU action on dementia with two Council recommendations on public health strategies to combat neurodegenerative diseases associated with ageing and in particular AD143 and on research joint programming: initiative on combating neurodegenerative diseases.144 Successive EU Presidencies either specifcally addressed dementia or convened a meeting of the European Commission Group of Government Experts on Dementias (Sweden – 2009, Belgium – 2010, Italy – 2014, Luxembourg – 2015, the Netherlands and Slovakia – 2016, Malta – 2017). In 2015, these latter three EU Presidencies signed a joint gender equality trio Declaration of cooperation for the period of their Presidencies.145

Unfortunately, gender equality in health is not mentioned !

In 2007, the European Commission White Paper ’Together for Health: A Strategic Approach for the EU 2008-2013’146 identified the need for neurodegenerative diseases such as AD to be better understood in the context of demographic ageing. Building on the French EU Presidency conference recommendations of 2008, the European Commission launched in 2009 a Communication on a ‘European initiative on Alzheimer’s disease and other dementias’ setting out actions providing support to Member States to ensure effective and effcient recognition, prevention, diagnosis, treatment, care, and research for AD and other dementias in Europe.147 A couple of European Joint Actions (JA) illustrate the promotion and implementation of coordinated actions to improve the lives of those living with dementia and their carers. ‘ALzheimer COoperative Valuation in Europe’ (ALCOVE) focused on four core areas: epidemiology and prevalence, diagnosis and systems for diagnosis, care for behavioural disorders and the rights and dignity of people living with dementia. This JA delivered a series of recommendations for Member States to address. ‘DEM2’ (‘Act on Dementia’) which148 ran from 2015 to 2018 focussed on diagnosis and post diagnostic support, crisis and care coordination, residential care and dementia friendly communities. The European Commission Group of Government Experts on Dementias was a forum for exchange between Commission and Member States and between Member States themselves on issues of common interest. They monitored progress in implementing the JAs on dementia, compared situations in Member States, supported EU Presidencies in dementia-related actions and engaged dementia-related activities in other EU-policy areas.

European and national Alzheimer
associations have largely contributed
to the awareness-raising about the
dementia challenge at European and
national level

 

The European Parliament also played an important role: in 2009, it adopted a Written Declaration 80/2008 calling on the Commission to adopt a European Action plan on dementia149 as well as a Resolution on the Joint Programming of research to combat neurodegenerative diseases, in particular AD.150 In 2011, it adopted a Resolution on a European Initiative on AD and other dementias.151

European and national Alzheimer associations have largely contributed to the awareness-raising about the dementia challenge at European and national level. The calls for action and policy recommendations of Alzheimer Europe’s Declarations (Paris– 2006152 and Glasgow– 2014153) have paved the way for EU and national action. The European Alzheimer’s Alliance in the European Parliament (an informal group of Members of the European Parliament who support Alzheimer Europe in making dementia a European public health, social and research priority) has signifcantly helped shape EU action on dementia.


The global response on
dementia

The World Dementia Council is leading the global action against dementia. It was created in 2014 after the G8 Dementia Summit convened by UK Prime Minister, David Cameron. The Health Ministers present at the Summit signed a ‘Declaration and Communiqué’ in which they committed to tackle dementia together. Women and dementia appeared as a priority cross-cutting issue in the Council’s work.154

In 2012, the WHO already recognised dementia as a public health priority. Its report ‘Dementia: a public health priority’155 provides information and raises awareness about dementia. The report also aims to strengthen public and private efforts to improve care and support for people with dementia and for their caregivers

The frst WHO Ministerial Conference on ‘Global Action against Dementia’, with the support of the UK DoH and OECD was organised in 2015.156 This conference raised awareness about the public health and economic challenges of dementia, a better understanding of the roles and responsibilities of Member States and stakeholders. At the end of the conference, the participants adopted an 11-point Call for Action to the WHO and nations around the world on behalf of people living with dementia and their caregivers, families, and communities. The Call for Action includes greater public awareness of dementia, building capacity for early identifcation and timely diagnosis, increasing global efforts on dementia research, and strengthening services and supports for people living with dementia and their families. Importantly, the Call for Action has emphasised the importance of supporting a gender-sensitive approach in the elaboration of plans, policies and interventions aimed at improving the lives of people living with dementia. When referring to care, the ‘Call for Action’ recognises the need of building the workforce and the support for mutual care-taking across generations at an individual, family and society level, and strengthening of support and services for caregivers and families.

In 2017, participants at the World Health Assembly endorsed a global action plan on the public health response to dementia 2017-2025 and committed to developing ambitious national strategies and implementation plans.157 Areas for action include:

  • reducing the risk of dementia,
  • diagnosis, treatment and care,
  • research and innovative technologies,
  • and development of supportive environments for carers.

The participants also called on the WHO Secretariat to offer technical support, tools and guidance to Member States as they develop national and subnational plans and to draw up a global research agenda for dementia. They emphasised the need to integrate health and social care approaches, and to align actions to tackle dementia with those for other aspects of mental health, as well as non-communicable diseases and ageing. They also highlighted the importance of ensuring respect for the human rights of people living with dementia, both when developing plans and when implementing them.

The delegates recognized the importance of a WHO’s Global Dementia Observatory as a system for monitoring progress both within countries and at the global level. This became a reality in December 2017, when the WHO launched The Global Dementia Observatory, a web-based platform to track progress on the provision of services for people with dementia and for those who care for them, both within countries and globally. The Observatory will monitor the presence of national policy and plans, risk reduction measures and infrastructure for providing care and treatment. It also provides Information on surveillance systems and disease burden data.

In March 2015, the OECD published ‘Addressing Dementia – The OECD Response’.158 This publication examines the large and growing human and fnancial cost of dementia and discusses policy options for improving care, controlling costs, and facilitating research.

In 2018, the OECD report ‘Care Needed – Improving the lives of people with dementia’ presented new data on the quality of dementia care in the OECD countries.159

The fndings show:

  • that the countries are poorly equipped to identify dementia,
  • the quality of care for people with advanced dementia is poor and
  • results in worsening health outcomes

The OECD is also implementing the OECD/WHOFramework to improve dementia care and other policies to improve the lives of people living with dementia EU stakeholders.

The Sustainable Development Goals (SDGs) are another instrument that can support initiatives that will look at improving the fate of women facing dementia, as patients or carers such as reducing poverty (SDG1) and inequalities (SDG10), alongside ensuring good health and well-being for all (SDG3).160


The way forward

Sex and gender differences are still widely overlooked in European, national and international dementia policy and there is scarce knowledge about women living with dementia and women caring for people with dementia. We need to improve the awareness and understanding of dementia across society. Knowledge and awareness will affect the way policy, society and science approach AD as a whole.

This will help develop and implement dementia policies and plans taking into consideration the specifcities of both women as patients and care-givers at EU, national and international levels.

The ageing of the population and the predicted increase in the number of people with dementia is a crucial socio-economic challenge that will test the viability of the healthcare services in every European Member State and lead us to rethink how healthcare services need to be organised.

The greatest burden of AD and dementia now requires a focused sex and gender public health response as a priority for women’s health. Existing policies need to be prioritised, actioned and supported with adequate funding taking account the future population burden of dementia.

Nationally representative studies are required to provide accurate population prevalence estimates for Member States in order to accurately inform dementia policy. The voices of people with dementia are still under-represented in policy development regarding their care. Policy needs to adequately represent the voice of people living with dementia and ensure equal representation of women in dementia policy.

It is critical that Europe invests in health and social care systems to support an ageing population with dementia. Policies should take account of sex and gender specifc discrepancies in accessing care, particularly for those women disadvantaged by social insurance schemes based on employment contributions.

There is now international consensus justifying focused public health action to prevent dementia. 161,162,163,164 Such approaches must consider a sex and gender approach to dementia prevention which is likely to be more effective. As the experience of living with dementia and caring for individuals with dementia is gendered, future studies in these areas should also investigate gender differences.

At this stage, it is urgent to address the differences between men and women in symptoms and neuropathology of AD as well as the gaps that exist in the feld. This will be achieved by analysing and stratifying clinical data by sex. The role of comorbidities which differ between men and women have to be also taken into account as well as the different development of the disease, specific features of cognitive decline, clinical symptoms and progression. Another crucial aspect is to understand whether the risk factors profles for developing AD differ according to sex and gender. In this way, it will be possible to implement specifc preventive measures. Finally, clinical trials should enrol more women above all in the early phases of drug development when the drug effect is characterised in order to identify the sex effects and sex-genotype interactions in a disease which is more frequent in women. In this regard, also the strategy to identify specifc biomarkers to diagnose and characterise disease progression should consider whether sex and gender influence their profle, specifcity and sensitivity.

To consider sex and gender factors is crucial also in neuroscience research where most of pre-clinical studies either are using male rodent models or do not report sex effects or stratifcation of data by sex.  This is happening despite of the fact that several sex-effects are observed or can be modelled in AD mice model.

As evidence is showing, women and dementia must become a global,

European and national public health, social and research policy. All EU, national and global action on AD and other forms of dementia must include the following priorities:

  • Include a sex and gender perspective in all dementia and AD awareness campaigns

 

  • Develop and implement dementia policies and plans taking into consideration the specifcities of women

 

  • Promote early diagnosis of dementia to mitigate disease progression and increase quality of life.

 

  • Strengthen the healthcare and social systems to address women’s specific needs in dementia care and prevention.

 

  • Ensure dementia research include a sex and gender approach, including more women in clinical trials.

 

  • Raise awareness and promote sex and gender-sensitive precision medicine in the field of neurology related to dementia.

 

  • Disaggregate dementia and brain research data by sex to ensure precision medicine application for both women and men.

 

  • Move towards an inclusive and dementia friendly society to remove fear, stigma and isolation.

 

  • Adapt employment and care support structures for people living with dementia and their carers.

 

  •  Engage and give women a role right from the start in the design of biomedical, health and social research.

 

  • Signifcantly increase funding for dementia medical and social research

Policy Recommendations

Policy makers and governments have the power to address the dementia challenge. They must develop new approaches to better understand the development of the disease, identify new approaches to prevent, diagnose or cure AD, dedicate meaningful funds to research, provide the necessary support to people with the disease and their carers. As current knowledge shows that women are at the epicentre of the AD crisis, all initiatives and measures must evolve around a sex and gender axis.

The policy recommendations below are underpinned by cross-cutting principles such as the human rights of people with dementia, consistent with the UN Convention on the Rights of People with Disabilities and the EU Charter of Fundamental Rights,165 the empowerment and engagement of people with dementia and their carers in awarenessraising, advocacy, policy and dementia plans development, health systems strengthening, monitoring and research, a multi-sectorial collaboration to improve prevention, risk reduction, diagnosis, treatment and care, support for research and generation of new knowledge towards fnding disease-modifying treatments or a cure, effective risk reduction interventions and innovative models of care targeted at women and dementia, gender equity and sex and gender-sensitive perspective consistent with the EU2020 strategy and the 2030 Agenda for Sustainable Development.


Call upon the European Commission to:

 

  • Develop a European dementia strategy that includes a clear sex and gender mainstreaming approach.
  • Facilitate exchange of best practices and support EU.
  • Joint Actions that will improve the state of women’s health and socioeconomic status in the EU.
  • Embed women’s brain health in all European public health, social and research social policies.
  • Intensify research aimed at understanding how sex and gender factors may influence dementia occurrence, disease symptoms, progression, diagnosis and treatment.
  • Increase European funding to offset any EU preclinical and clinical research, psycho-social, care, socioeconomic and health systems research gap.
  • Promote Public Private Partnerships to tackle the specifcities of women and dementia.
  • Increase funding to improve epidemiological data on AD and other dementias.
  • Increase research to provide gender disaggregated necessary data on caregiving from a gender perspective in order to design and develop tailor-made services that enhances the quality of life of patients and caregivers alike.
  • Dedicate EU funding to help Member States provide specialised centres that will allow timely diagnosis and also the education of health professionals.
  • Support Member States to adapt employment and care support structures for people living with dementia and their carers within responsive healthcare systems, in line with the European Pillar of Social Rights.
  • Use tools like the EU Semester to support and monitor progress towards improving the quality of life of women and AD.


Call upon the Members of the European
Parliament to:

  • Raise awareness at national and EU level about women’s brain health and the specifc public health and social challenges faced by women confronted with dementia as both patients and caregivers.

  • Spearhead EU and national level health, social, educational, legal and research policies that will address these challenges.

  • Call for an ambitious European dementia strategy taking into account the specifc challenges of women and dementia.

  • Act as ambassadors at national level to raise awareness about women and AD and support national actions.
  • Be active participants in the Global Action against Dementia.
  • Build on the expertise of civil society to propose policies and recommendations that support prevention, early diagnosis, treatment and care for women affected by dementia.

     Call upon the national governments to:

  • Strengthen their health and social systems to improve the situation of people with dementia and their caregivers.
  • Embed women and AD in the development of comprehensive national dementia strategies that acknowledge and address the role of sex and gender.
  • Dedicate signifcant funding for women’s brain health with a focus on AD and dementia.
  • Include representatives of civil society to develop, monitor and implement these strategies.
  • Support medical and social research evidence that will underpin all actions.
  • Support nation-wide awareness campaigns about the challenges of women and AD and reduce stigma.
  • Devise employment strategies that will respond to the specifc needs and adaptations necessary to maintain active participation in society of people with AD and their carers.
  • Fill the gap between the need for early diagnosis, treatment and care and the actual provision of these services.
  • Create specialised centres in the European territory aimed to diagnose the disease timely by educating health professionals.

Call upon the international community to:

  • Embed gender mainstreaming in the development of a global action plan on dementia.
  • Prioritise women and dementia within the UN Sustainable Development Goals and international bodies such as G20, the Organisation for Economic Cooperation and Development (OECD) and the World Health Organisation (WHO).
  • Facilitate pooling of resources, exchange of information and research activities between European and international organisations focusing on women’s brain health supporting and contributing to the global research and public health agenda.
  • Reinforce international collaboration and private/public sector partnerships to advance knowledge across the spectrum from prevention to more effective treatments.

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