Alzheimer report 2018 front

WOMEN AND DEMENTIA IN EUROPE

A POSITION PAPER

Addressing the Disproportionate Burden of Dementia on Women

European Institute of Women’s Health

Download available here – Women and dementia in Europe report-2017 (pdf)

About the European Institute of Women’s Health

Founded in 1996, the European Institute of Women’s Health (EIWH) is 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 socio-economic 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’, specific 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 benefitting the whole dementia community.

As AD predominantly affects women, as patients and carers, the European Institute of Women’s Health is taking the lead in bringing the specificities of women and AD into the European policy arena. In the absence of any significant attention being paid to women and AD in Europe, this Position Paper is the first 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 findings, 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.Antonella Santuccione,Dr.Annemarie Schumacher Women‘s Brain Project

Dr Merce 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

December 2018 – European Institute of Women’s Health

Table of contents

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 and is the only condition in the top 10 causes of death without a treatment to prevent, cure or slow its progression. Dementia significantly 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 the 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 significantly 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 financially dependent on their partner. Furthermore, the vast majority of carers for people with dementia are women both in formal and informal capacities. Women experience more acutely the strain of caring for family members with dementia and are more likely than men to give up paid employment in order to fulfil 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 modified at different stages in the life-course with the strongest evidence for improved education in early life, reduced hypertension and obesity in midlife, 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 modified substantially by population health approaches which (1) target lifestyle behaviours and socioeconomic 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 specificities of women as both patients and caregivers. It 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, and provide the necessary support to people with the disease and their carers. All initiatives and measures must evolve around a sex and gender axis.


Foreword

Women and Dementia in Europe: the way forward

Foreword by

Vytenis Andriukaitis, European Commissioner for Health and 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 five 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 financially. The European Commission remains committed to this goal, through leadership and financial support for national and international programmes, as well as research and development.4

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

Sincerely,

Vytenis Andriukaitis

 


Introduction

Dementia is the greatest global and societal challenge for health and social care in the 21st century. In 2018, 50 million people worldwide are 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.i 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.ii

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.iii 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.iv 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 yearsv, 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.vi It is the only condition in the top 10 causes of death without a treatment to prevent, cure or slow its progression.vii For instance, figures from the Office for National Statistics in the UK show that dementia is the most common cause of death in England and Wales. The figures 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.viii, ix, x

The personal, economic and social consequences of dementia are huge. The disease significantly compromises quality of life for the individuals affected, their carers and families. It is the greatest cause of disability and dependency in later lifexi 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.xii

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.xiii 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.xiv ADI estimates that this will double by 2050 to 14.32 million people with dementia living in Western Europexv (Table 1). Central Europe (1.07 million) and Eastern Europe (1.94 million) have comparatively lower numbers of people living with dementia, 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.

Table 1. Current and projected estimates of prevalence and frequency of dementia in Europe

 

GBD European Region

Over 60 population (millions, 2015)

Crude estimated prevalence (%, 2015)

Number of people with dementia (millions)

Proportionate increases (%)

2015

2030

2050

2015-2030

2015-2050

Western Europe

107.89

6.9

7.45

9.99

14.32

34

92

Central Europe

26.92

4.0

1.07

1.39

1.90

30

78

Eastern Europe

41.80

4.6

1.94

2.03

2.44

4

26

EUROPE

176.61

5.9

10.46

13.42

18.66

28

78

 

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

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

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’xvii 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.xviii,xix A recent systematic review estimated the pooled rate of undetected dementia to be 61.7%.xx

Dementia risk is determined by a complex interaction of modifiable and non-modifiable factors. Non-modifiable 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).xxi

Figure 2. Estimated annual numbers of incident cases of dementia by age group and GBD European Region

 

While ageing is the single, strongest risk factor for dementiaxxii, 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.xxiii It takes on average 4.4 years for younger people to be diagnosed.xxiv 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 frontotemporal dementia, posterior cortical atrophy, and Lewy Body dementia. Many younger people are misdiagnosed with depression, anxiety, stress, personality disorders, marital issues or menopause. 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’xxv 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.

The low levels of awareness about the disease and the difficulties of diagnosing the condition at working-age 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).xxvi,xxvii Harvey and colleaguesxxviii 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 with Down’s syndrome aged 40-49 and 30-75% aged 60-69 are likely to develop dementiaxxix which is due to Alzheimer pathology.xxx

YOD carries a higher mortality risk compared to late onset dementia.xxxi,xxxii It is more prevalent than previously thoughtxxxiii and its prevalence is increasing.xxxiv It is estimated that YOD may account for between 6 to 9% of all dementia cases.xxxv

People with YOD face specific 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 significant financial commitments, children to care for and dependent parents.

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.xxxvi

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.xxxvii

The societal and economic impact of dementia in Europe is substantial including direct medical and social care costs as well as significant informal care contributions.xxxviii 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.xxxix Out of pocket costs for dementia care contribute significantly 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).xl Wimo et alxli 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.

Table 2. Estimated costs of dementia in Europe

Costs of dementia in each European Region (US$ billions)

Informal care costs

Direct costs

Total cost of dementia

Cost per person of dementia

Change (%) in per person costs between 2010-2015

Medical

Social sector

Western Europe

98.9

50.8

113.0

262.7

35,255

17.0%

Central Europe

9.1

2.8

3.1

15.0

14,056

9.0%

Eastern Europe

13.0

5.7

4.9

23.6

12,104

57.9%

All Europe

130.0

59.3

121.0

301.3

17,932

30%

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.xlii Spending on prevention accounted for only 3% of all expenditure on health in 2010 in OECD EU countries.xliii 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.xliv Adopting a public health approach to reduce the prevalence of dementia as advocated by the WHO, ADI and the Blackfriars Consensusxlv 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

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

Country

Men

Women

Austria

45,938

99,494

Belgium

62,972

128,309

Bulgaria

37,851

72,042

Croatia

20,394

46,682

Cyprus

4,333

6,917

Czech Republic

45,532

97,778

Denmark

29,715

55,847

Estonia

5,469

16,252

Finland

29,287

62,945

France

375,843

799,113

Germany

517,136

1,054,968

Greece

75,392

126,375

Hungary

43,636

105,291

Ireland

17,895

31,574

Italy

414,975

857,341

Latvia

8,902

26,812

Lithuania

12,567

34,768

Luxembourg

2,327

4,662

Malta

1,878

3,423

Netherlands

83,247

162,314

Poland

150,371

350,721

Portugal

62,260

120,266

Romania

90,484

179,820

Slovakia

17,834

40,774

Slovenia

9,324

22,711

Spain

280,149

538,197

Sweden

60,479

112,656

United Kingdom

360,581

677,210

Total

2,866,771

5,835,262

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.xlvi 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 yearxlvii 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).xlviii 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.xlix 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 significance 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 into 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 profile than women of the same age and are therefore protected from dementia at older ages.l If this was confirmed, 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.

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 scientific literature clearly demonstrates that sex and gender differences are indeed of very high relevance for diagnosis and treatment of AD.li

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.lii 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 significantly correlated with reduced incidence of dementia (including AD) over three decades in the Framingham heart study.liii In AD studies, women show consistently lower education levels than men. However, the specific 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 ε3/ε4 genotype have an increased risk at younger ages to develop AD than men.liv 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 significantly associated with Alzheimer’s dementia in women but not in men.lv More recently, sex-specific effects were reported between vascular risks factors and dementia onset, with overweight and physical activity being, respectively harmful and protective, specifically in women.

A recent study in the population-based Mayo Clinic Study of Ageing identified sex-specific 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 specific predictors for MCI conversion in women. Obesity and marital status were specific to men, while stroke, atrial fibrillation, history of alcohol abuse, education and self-reported memory concerns were confirmed AD predictors in both men and women.lvi

A recent meta-analysis revealed that individuals with sleep problems have higher risk for AD dementia.lvii 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.lviii The specific 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.lix On average, women have higher rates of depression than men. Depression is also linked to cardiovascular disease, the latter a significant risk factor for stroke.lx

Late-life depression has a strong correlation with the risk of developing AD.lxi 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-specific risk factors for dementia, like pregnancy induced hypertension, and pre-eclampsia. Pre-eclampsialxii has been associated with higher risk for cardiovascular diseaselxiii and cognitive impairment later in life.lxiv Hysterectomy and oestrogen loss after menopause 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.lxv

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.lxvi Women with mild cognitive impairment (MCI) experience memory declines twice as fast as men.lxvii Progression of dementia is different between men and womenlxviii and it may be faster in women and individuals with YOD.lxix However, clinical data are rarely stratified by sex and evidence supporting these reports is required. It has been reported that women experience more pronounced symptoms of dementia compared to men.lxx Women have a broader spectrum of dementia related behavioural symptoms with a predominance of depression and delusionlxxi,lxxii while aggressive behaviour is more frequently observed in men.lxxiii Older research showed poorer cognitive profiles 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 confirmed in recent studies. Sex-specific 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.lxxiv

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 confirmed, it might indicate that women are on average diagnosed later than men (as suggested by Pradier et al.lxxv ). Early diagnosis in women might therefore require sex-specific 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.lxxvi 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.lxxvii 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.lxxviii 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.lxxix Women face more economic and social disadvantage than men in later life. Women are more financially 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.lxxx 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.lxxxi 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 figure that will increase to 65 million full time workers by 2030.lxxxii

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 reportlxxxiii (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 significantly 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’.lxxxiv,lxxxv 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.lxxxvi

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.lxxxvii,lxxxviii,lxxxix Women experience the strain of caring for family members with dementia more acutelyxc, reporting higher levels of stress, depression and anxiety symptoms as well as lower levels of quality of life.xci Also, the women who provide informal care feel overloaded in 30.9% of situations, unlike men (23.6%).xcii Elderly women caring for a loved one who has dementia may be particularly susceptible to the negative health effects of caregiving because they receive significantly less help from family members for their own disabilities.xciii 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.xciv,xcv Women are two and a half times more likely than men to provide care when they live with the care recipientxcvi 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.xcvii,xcviii Almost one fifth 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.xcix

Wives have been found to be particularly vulnerable to carer burden as they spend much greater time on caring activities compared to menc: 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 rolesci, 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 financial stresscii 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.ciii 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.civ,cv

Reduced earning capacity coupled with increased out-of-pocket medical expenditure may leave carers particularly vulnerable. Although many countries provide a carers allowance, this often falls short. Access to adequate social care is often limited and carers report difficulties 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.cvi 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.cvii

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.cviii,cix,cx,cxi 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.cxii 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.cxiii

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.cxiv 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 of 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.cxv

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.cxvi 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 agents to delay or cure dementia have been identified 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 modified substantially by population health approaches which 1) target lifestyle behaviours and socioeconomic factors to lower dementia incidence, 2) improve and increase interventions to modify dementia progression and 3) develop treatment and care management sex and 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.cxvii Addressing these factors could substantially reduce dementia prevalence in later life. Adopting a brain healthy lifestyle which addresses many of these modifiable factors can help to build brain reserve, so that cognitive function remains intact for longer.cxviii One model showed that if these risk factors were modified 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.cxix

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-TORPcxx 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 cardio-respiratory functions) and maintain social bonds (via social interactions between the players themselves and the players with their doctor).

One serious game, Sea Hero Questcxxi, 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 profile of investing in innovations for women and girls.cxxii

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.cxxiii Future epidemiological research will confirm 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 onset 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 benefit from interventions and support, is a pre-requisite for good dementia care.cxxiv However, a timely diagnosis may be difficult 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 specifically trained mental health professionals can proceed with a precise diagnosis.

AD remains largely under diagnosed. To redress this deficit, 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 scientific yardstick, in the form of a certified 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 finding ways to diagnose, prevent and treat dementia. The EU Joint Programme – Neurodegenerative Disease Research (JPND)cxxv 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)cxxvi, MOPEAD (Models Of Patient Engagement for AD)cxxvii, ROADMAP (Real world outcomes across the AD spectrum for better care: multi-modal data access platform)cxxviii, AMYPAD (Amyloid imaging to prevent AD)cxxix, EMIF (European Medical Information Framework)cxxx, AETIONOMY (Organising mechanistic knowledge about neurodegenerative diseases for the improvement of drug development and therapy).cxxxi

The European Health Programme 2014/2020cxxxii 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 Projectcxxxiii, 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 specific 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.cxxxiv

Figure 3. The status of national dementia strategies in Europe

EU national dementia strategies

While the need to ensure gender equality for health, particularly for older women has been highlighted in a number of international policy developmentscxxxv, a recent United Nations review shows very little progresscxxxvi and there is little acknowledgement of the disproportionate burden that dementia confers on women.cxxxvii Two recent international reports have been published directly addressing the issue of women and dementia. ADI published a report specifically on Women and Dementia in 2015cxxxviii and the Global Alzheimer‘s and Dementia Action Alliance published a report on the Global Challenge of Women and Dementia in 2017.cxxxix 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 specific 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.cxl 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 genderedcxli, the strategy proposes the adoption of an appropriate care model for integrating gender sensitive care into dementia care.

National plans from Malta, 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-modifiable 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 reviewcxlii of all the national dementia plans and strategies collated by ADI reveals that there are very few gender sensitive responses. There is a need 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 in Europe

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 kick-started EU action on dementia with two Council recommendations on public health strategies to combat neurodegenerative diseases associated with ageing and in particular ADcxliii and on research joint programming: initiative on combating neurodegenerative diseases.cxliv Successive EU Presidencies either specifically 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.cxlv 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’cxlvi 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 efficient recognition, prevention, diagnosis, treatment, care, and research for AD and other dementias in Europe.cxlvii

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’)cxlviii will run from 2015 to 2018 focusing 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.

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

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 – 2006clii and Glasgow – 2014cliii) 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 significantly helped shape EU action on dementia.

The global response to 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 now appears as a priority cross-cutting issue in the Council’s work.cliv

In 2012, the WHO already recognised dementia as a public health priority. Its report ‘Dementia: a public health priority’clv 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 first WHO Ministerial Conference on ‘Global Action against Dementia’, with the support of the UK DoH and OECD was organised in 2015.clvi 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 identification 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 is emphasizing 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.clvii 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 emphasized 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’.clviii This publication examines the large and growing human and financial 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.clix The findings 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/WHO-Framework 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)clx.

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 specificities 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 of 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 specific 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.clxi,clxii,clxiii,clxiv 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 field. This will be achieved by analysing and stratifying clinical data by sex. The role of co-morbidities 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 profiles for developing AD differ according to sex and gender. In this way, it will be possible to implement specific 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 specific biomarkers to diagnose and characterize disease progression should consider whether sex and gender influence their profile, specificity 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 stratification 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 specificities 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

  • Significantly increase funding for dementia medical and social research

POLICY RECOMMENDATIONS

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 Disabilities5 and the EU Charter of Fundamental Rightsclxv, the empowerment and engagement of people with dementia and their carers in awareness-raising, 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 finding 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.

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.

 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, socio-economic and health systems research gaps

  • Promote Public Private Partnerships to tackle the specificities 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 specific 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 specific 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 significant 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 specific 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

  • 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

  • Promote dementia gender mainstreaming as a priority in international bodies such as G20, the Organisation for Economic Co-operation and Development (OECD), the World Health Organisation (WHO) and the United Nations

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

5 The UN Convention on the Right of People with Disabilities (UNCRPD) is the first international legally binding instrument that sets minimum standards for rights for people with disabilities and the first human rights convention to which the EU has become a party. The EU as well as all EU Member States are thus committed to upholding and protecting the rights of persons with disabilities as enshrined in the Convention. The core elements of the Convention are reflected in the European Disability Strategy 2010-2020. The Convention that has a broad definition of people with disabilities (“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”) obviously include people living with dementia. The Convention also makes express references to women: Preamble emphasizes ‘the need to incorporate a gender perspective in all efforts to promote the full enjoyment of human rights and fundamental freedoms by persons with disabilities” and article 6 Women with disabilities: (1) States Parties recognize that women and girls with disabilities are subject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms, and (2) States Parties shall take all appropriate measures to ensure the full development, advancement and empowerment of women, or the purpose of guaranteeing them the exercise and enjoyment of the human rights and fundamental freedoms set out in the present Convention.” The Convention has been ratified by the European Union.

i World Health Organization. Dementia: number of people affected to triple in next 30 years, 7 Dec 2017.

http://www.who.int/news-room/detail/07-12-2017-dementia-number-of-people-affected-to-triple-in-next-30-years

ii World Health Organization (2008). The Global Burden of Disease: 2004 Update. Geneva, Switzerland.

iii Sousa RM, Ferri CP, Acosta D et al (2009). Contribution of chronic diseases to disability in elderly people in countries with low and middle incomes: a 10/66 Dementia Research Group population- based survey. Lancet, 374(9704):1821- 30.

iv OECD/EU (2016), Health at a Glance: Europe 2016 – State of Health in the EU Cycle, OECD Publishing, Paris. http://dx.doi.org/10.1787/9789264265592-en

v Masters CL, Bateman R, Blennow K et al (2015). Alzheimer’s disease. Nature Reviews Disease Primers.

vi Ames B, Leurgens SE, Hebert LE et al (2014). Contribution of Alzheimer’s Disease to mortality in the United States. Neurology, 82:1045–50.

vii Alzheimer’s Disease International (2014). World Alzheimer’s Report 2014. Alzheimer’s Disease International: London, UK.

ix O’Dowd A (2017). Dementia is now leading cause of death in women in England.BMJ;358:j3445.

xi World Health Organization (2016). Global Health Estimates 2015: Burden of disease by Cause, Age, Sex, by Country and by Region, 2000-2015. Geneva, Switzerland.

xii Bunn F, Burne AM, Goodman C et al (2014). Comorbidity and Dementia: a scoping review of the literature. BMC Medicine, 12:192.

xiii World Health Organization (2016). Global Health Estimates 2015: Burden of disease by Cause, Age, Sex, by Country and by Region, 2000-2015. Geneva, Switzerland.

xiv World Health Organization (2016). Global Health Estimates 2015: Burden of disease by Cause, Age, Sex, by Country and by Region, 2000-2015. Geneva, Switzerland.

xv Alzheimer’s Disease International (2015). World Alzheimer Report 2015; The Global Impact of Dementia: an analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International: London, UK.

xvi OECD (2018), Care Needed: Improving the lives of people with dementia, OECD Health Policy Studies, OECD Publishing, Paris.

https://doi.org/10.1787/9789264085107-en

xviii Manthorpe J, Samsi K Campbell et al (2011).  (NIHR Service Delivery and Organisation Programme). London: Queen’s Printer and Controller of HMSO 2010.

The transition from cognitive impairment to dementia: Older people’s experiences (in press).

xix Brooker D, La Fontaine J, Evans S et al (2014). Public health guidance to facilitate timely diagnosis of dementia: ALzheimer’s COoperative Valuation in Europe recommendations. International Journal of Geriatric Psychiatry. 29 (7):682-93.

xx Lang L, Clifford A, Wei L, et al (2017). Prevalence and determinants of undetected dementia in the community: a systematic literature review and a meta-analysis. BMJ Open, 7:e011146. 

xxi Alzheimer’s Disease International (2015). World Alzheimer Report 2015; The Global Impact of Dementia: an analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International: London, UK.

xxii Jack C, Wiste H, Weigand S et al (2015). Age, Sex, and APOE epsilon4 Effects on Memory, Brain Structure, and beta-Amyloid Across the Adult Life Span. JAMA Neurol., 72(5): 511-9.

xxiii Alzheimer’s Society (2014). Dementia UK, 2nd edition, Alzheimer’s Society.

xxiv Bakker C, de Vugt M, van Vliet D et al (2013). The Use of Formal and Informal Care in early onset dementia: results from the NeedYD study. Am J Geriatric Psychiatry, 21(1): 37-45.

xxv Young Dementia Network (2017). Diagnosing Dementia in younger people.

https://www.youngdementiauk.org/sites/default/files/GP%20Guide.pdf

xxvii Young Dementia UK (2018). Young onset dementia Facts and figures.

https://www.youngdementiauk.org/young-onset-dementia-facts-figures

xxviii Harvey RJ, Skelton-Robinson M, Rossor MN (2003). The prevalence and causes of dementia in people under the age of 65 years. J Neurol Neurosurg Psychiatr, 74:1206–09.

xxix Young Dementia UK (2018). Living with a learning disability and Young onset dementia. https://www.youngdementiauk.org/living-learning-disability-and-young-onset-dementia

xxx Hartley D, Blumenthal T, Carrillo M et.= al (2015). Down Syndrome and Alzheimer’s disease: Common Pathways, Common Goals. Alzheimers Dement., 11(6): 700-709.

xxxi Sampson EL, Warren JD, Rossor MN (2004). Young onset dementia. Postgrad Medicine Journal,80: 125–39.

xxxii Koedam EL, Pijnenburg YA, Deeg DJ et al (2008). Early-onset dementia is associated with higher mortality. Dementia Geriatric Cognitive Disorder, 26:147–52.

xxxiii McMurtray A, Clark DG, Christine D et al (2006). Early-onset dementia: frequency and causes compared to late-onset dementia. Dementia and Geriatric Cognitive Disorders, 21:59–64.

xxxiv Werner P, Stein-Shvachman I and Korczyn AD (2009). Early onset dementia: clinical and social aspects, International Psychogeriatrics, 21:631-6.

xxxv Knapp M, Prince M. (2007) Dementia UK – A report into the prevalence and cost of dementia prepared by the Personal Social Services Research Unit (PSSRU) at the London School of Economics and the Institute of Psychiatry at King’s College London, for the Alzheimer Society. London, Alzheimer Society.

xxxvi OECD (2015), Addressing Dementia: The OECD response. OECD Health Policy Studies, OECD Publishing, Paris. https://doi.org/10.1787/9789264231726-en

xxxvii European Commission (2018). The Ageing Report. Economic & Budgetary Projections for the 28 EU Member States (2016-2070). Economic and Financial Affairs, European Economy, Institutional Paper 079.

xxxviii Alzheimer’s Disease International (2015). Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

xxxix The Economist Intelligence Unit (2017). Assessing the Socioeconomic Impact of Alzheimer’s Disease in Western Europe and Canada. Sponsored by Lilly. The Economist Intelligence Unit Limited.

xl Alzheimer’s Disease International (2015), World Alzheimer Report 2015; The Global Impact of Dementia: an analysis of prevalence, incidence, cost and trends. Alzheimer’s Disease International: London, UK.

xli Wimo A, Jonsson L, Gustavsson A et al (2011). The economic impact of dementia in Europe in 2008—cost estimates from the Eurocode project. International Journal of Geriatric Psychiatry, 26(8):825-832.

xlii Quaglio G, Karapiperis T, Van Woensel L et al (2013). Austerity and Health in Europe. Health Policy, 113:13-19.

xliii OECD (2012). Health Data Eurostat statistics database. Frequently requested data. http://www.oecd.org/health/health-systems/oecdhealthdata2012-frequentlyrequesteddata.htm

xliv European Commission/ Social Protection Committee (2014). Adequate social protection for long term care needs in an ageing society. Employment, Social Affairs and Inclusion., Luxembourg.

xlv Lincoln P, Fenton K, Alessi C et al (2014). The Blackfriars Consensus on brain health and dementia. The Lancet, 383(9931).

xlvii OECD/EU (2016), Health at a Glance: Europe 2016 – State of Health in the EU Cycle, OECD Publishing, Paris.

http://dx.doi.org/10.1787/9789264265592-en

xlviii European Parliament (2015). Women’s Rights & Gender Equality: Elderly women living alone: an update of their living conditions. Directorate General for International Policies Policy department: citizens’ rights and constitutional affairs, Brussels.

xlix Mielke MM, Vemuri P and Rocca WA (2014). Clinical epidemiology of Alzheimer’s disease: assessing sex and gender differences. Clin Epidemiol, 6:37–48.

l Alzheimer’s Association (2015). Gender and Incidence of Dementia in the Framingham Heart Study from mid-adult life.“Journal of the Alzheimer’s Association, 11(3); 310-320.

li Ferretti MT, Iulita MF, Cavedo E et al (2018). Sex differences in Alzheimer disease —the gateway to precision medicine. Nature Reviews Neurology, 14: 457-469.

lii Podcasy JL and Epperson CN (2016). Considering sex and gender in Alzheimer disease and other dementias. Dialogues in Clinical Neuroscience, 18(4):437-446.

liii Satizabal CL, Beiser AS, Chouraki V et al (2016). Incidence of Dementia over Three Decades in the Framingham Heart Study. N Engl J Med, 374(6): 523-32.

liv Neu SC, Pa J, Kukull W et al (2017). Apolipoprotein E Genotype and Sex Risk Factors for Alzheimer Disease: A Meta-analysis. JAMA Neurol., 74(10):1178-1189).

lv Kivipelto MH, Ngandu T, Fratiglioni L et al (2005). Obesity and Vascular Risk Factors at Midlife and the Risk of Dementia and Alzheimer Disease. Arch Neurol., 62(10) : 1556-1560.

lvi Pankratz VS, Roberts RO, Mielke MM et al (2015). Predicting the risk of mild cognitive impairment in the Mayo Clinic Study of Ageing. Neurology, 84(14): 1433-42.

lvii Bubu OM, Brannick M, Mortimer J, et al (2017). Sleep, Cognitive impairment and Alzheimer’s disease: A systematic review and meta-analysis. Sleep, 40(1).

lviii Mallampalli MP, Carter CL (2014). Exploring sex and gender differences in sleep health: a Society for Women’s Health Research Report. J Women’s Health (Larchmt), 23(7): 553-62.

lix da Silva J, Gonçalves-Pereira M, Xavier M et al (2013). Affective disorders and risk of developing dementia: systematic review. The British Journal of Psychiatry,02(3): 177-86.

lx Wint D (2011). Depression: A shared risk factor for cardiovascular and Alzheimer disease. Cleveland Clinic Journal of Medicine, 78(10): S44-6.

lxi Saczynski JS, Beiser A, Seshadri S et al (2010). Depressive symptoms and risk of dementia: the Framingham Heart Study. Neurology, 75(1): 35-41

lxii Phung TK, Waltoft BL, Laursen TM et al (2010). Dement Geriatr Cogn Disord. ,30:43–50.

lxiii Brown MC, Best KE, Pearce MS et al (2013). Cardiovascular disease risk in women with pre-eclampsia: systematic review and meta-analysis. Eur J Epidemiol., 28(1): 1-19.

lxiv Fields JA, Garovic VD, Mielke MM, et al (2017). Preeclampsia and cognitive impairment later in life. Am J Obstet Gynecol, 217(1):74e1-74e11.

lxv Scerri C (2014). The curvy side of dementia: The impact of gender on prevalence and caregiving. Journal of the Malta College of Pharmacy Practice, 20: 37-39.

lxvi Holland D, Desikan RS, Dale AM et al (2013). Alzheimer’s Disease Neuroimaging. Higher rates of decline for women and apolipoprotein E epsilon4 carriers. AJNR American Journal of Neuroradiology, 34(12): 2287.

lxvii Blazek N (2015). Memory Decline More Rapid in Women than Men. Psychiatry Advisor.

http://www.psychiatryadvisor.com/aaic-2015-coverage/mild-cognitive-impairment-deterioration-by-gender/article/427438/

lxviii Artero S, Ancelin ML, Portet F et al (2008). Risk profiles for mild cognitive impairment and progression to dementia are gender specific. J Neurol Neurosurg Psychiatry, 79: 979–84.

lxix Tschanz JT, Corcoran CD, Schwartz S et al (2011). Progression of cognitive, functional, and neuropsychiatric symptom domains in a population cohort with Alzheimer dementia: the Cache County Dementia Progression study. Am J Geriatr Psychiatry, 19: 532–42.

lxx Alzheimer’s Disease International (2015). Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

lxxi Karttunen K, Karppi P, Hiltunen A et al (2011). Neuropsychiatric symptoms and quality of life in patients with very mild and mild Alzheimer’s disease. Int J Geriatr Psychiatry, 26(5): 473-82.

lxxii Spalletta G, Musicco M, Padovani A et al (2010). Neuropsychiatric symptoms and syndromes in a large cohort of newly diagnosed, untreated patients with Alzheimer disease. Am J Geriatr Psychiatry, 18(11): 1026-35.

lxxiii Schmidt R, Kienbacher E, Benke T et al (2008). Sex Differences in Alzheimer’s Disease. Neuropsych, 22(1):1-15.

lxxiv Laws KR, Irvine K, Gale TM (2016).. Sex Differences in Cognitive Impairment in Alzheimer’s Disease. World Journal of Psychiatry, 22; 6(1): 54-65.

lxxv Pradier C, Sakarovitch C, Le Duff F et al (2014). The Mini Mental State Examination at the Time of Alzheimer’s Disease and Related Disorders Diagnosis, According to Age, Education, Gender and Place of Residence: A Cross-Sectional Study among the French National Alzheimer Database. PLoS ONE, 9(8), e103630. http://doi.org/10.1371/journal.pone.0103630

lxxvi Alzheimer’s Association (2014). Alzheimer’s Disease Facts and Figures, Alzheimer and Dementia

lxxvii Ward-Griffin C, Bol N and Oudshoorn A (2006). Perspectives of Women with Dementia Receiving Care from Their Adult Daughters Canadian Journal of Nursing Research, 38 (1).

lxxviii Cahill S, Clark M, Walsh C et al (2006). Dementia in Primary Care: The first survey of Irish General Practitioners. International Journal of Geriatric Psychiatry, 21:319-324.

lxxix Global Alzheimer’s and Dementia Action Alliance (2017). Women and Dementia: A Global Challenge. London.

lxxx Bamford SM (2011). Women and Dementia – Not Forgotten: The International Longevity Centre UK.

lxxxi Alzheimer’s Disease International (2014). World Alzheimer’s Report 2014. Alzheimer’s Disease International: London, UK.

lxxxii Alzheimer’s Disease International & Karolinska Institute (2018). Global estimates of informal care. https://www.alz.co.uk/adi/pdf/global-estimates-of-informal-care.pdf

lxxxiv Carmichael F and Charles S (2003). The opportunity costs of informal care: Does gender matter? Journal of Health Economics, 22(5):781–803.

lxxxv Godfrey JR and Warshaw GA (2009). Toward optimal health: considering the enhanced healthcare needs of women caregivers. Journal of Women’s Health, 18(11),1739-1742.

lxxxvi Cañabate MP, Martínez G Rosende-Roca M et al (2017). Social representation of dementia: an analysis of 5,792 consecutive cases evaluated in a memory clinic. Journal of Alzheimer’s Disease. DOI:10.3233/JAD-161119.

lxxxvii Godfrey JR and Warshaw GA (2009). Toward optimal health: considering the enhanced healthcare needs of women caregivers. Journal of Women’s Health, 18(11),1739-1742.

lxxxviii World Health Organization (2012). Dementia: a public health priority. Alzheimers Disease International and World Health Organization: London, UK.

lxxxix Toribio-Díaz M, Medrano-Martínez V, Moltó-Jordá JM et al (2013). Characteristics of informal caregivers of patients with dementia in Alicante province. Neurología, 28(2), 95-102.

xc Alzheimer’s Disease International (2015)., Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

xci Papastavrou E, Kalokerinou A, Papacostas SS et al (2007). Caring for a relative with dementia: family caregiver burden. Journal of Advanced Nursing, 58(5):446–457.

xcii Cañabate MP, Martínez G Rosende-Roca M et al (2017). Social representation of dementia: an analysis of 5,792 consecutive cases evaluated in a memory clinic. Journal of Alzheimer’s Disease. DOI:10.3233/JAD-161119.

xciii Langa KM, Chernew ME, Kabeto MU et al (2001). National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine, 16(11): 770–778.

xciv Alzheimer’s Association (2014). Alzheimer’s Disease Facts and Figures, Alzheimer and Dementia.

xcv Godfrey JR and Warshaw GA (2009). Toward optimal health: considering the enhanced healthcare needs of women caregivers. Journal of Women’s Health, 18(11),1739-1742.

xcvi Alzheimer’s Association (2014). Alzheimer’s Disease Facts and Figures, Alzheimer and Dementia.

xcvii Carmichael F and Charles S (2003). The opportunity costs of informal care: Does gender matter?

Journal of Health Economics, 22(5):781–803.

xcviii Family Caregiver Alliance. (2001). Selected Caregiver Statistics (Fact Sheet). San Francisco.

xcix Shriver M (2010). The Shriver Report: A Woman’s Nation Takes On Alzheimer’s: A Groundbreaking Look At This Mind-Blowing Disease And Its Effect On Women As Patients, Caregivers, And Advocates. A study by Maria Shriver and the Alzheimer’s Association.

c Alzheimer’s Disease International (2015). Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

ci Lantz MS (2009). Psychiatry rounds. Who cares for the caregiver? Clinical Geriatrics, 17(10): 6–8.

cii Alzheimer’s Disease International (2015). Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

ciii Bolin K, Lindgren B and Lundborg P (2008). Your next of kin or your own career? Caring and working among the 50+ of Europe. Journal of Health Economics, 27(3):718–738.

civ Bolin K, Lindgren B and Lundborg P (2008). Your next of kin or your own career? Caring and working among the 50+ of Europe. Journal of Health Economics, 27(3):718–738.

cv Kotsadam A (2011). Does informal eldercare impede women’s employment? The case of European welfare states. Feminist Economics, 17(2):121–144.

cvi Alzheimer’s Disease International (2015). Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

cvii Alzheimer’s Disease International (2015). Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

cviii Cummings G, Spiwek T, Hewko S et al (2013). Shining A Light On The Unregulated Healthcare Aide Workforce. Final Report. Clear Outcomes and University of Alberta, Edmonton.

http://www.trec.ualberta.ca/

cix Alzheimer’s Association (2014). Alzheimer’s Disease Facts and Figures, Alzheimer and Dementia.

cx Alzheimer’s Disease International (2015). Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

cxi Hussein S and Manthorpe J (2012). The Dementia Social Care Workforce in England: Secondary analysis of a national workforce dataset. Aging & Mental Health, 16(1):110-118.

cxii Alzheimer’s Disease International (2015). Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

cxiii Alzheimer’s Disease International (2015). Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

cxiv Bauer JM and Souza-Poza A (2015). Impacts of Informal Caregiving on Caregiver Employment, Health, and Family. IZA Discussion Paper No. 8851, Institute for the Study of Labour, Bonn.

cxv European Commission (2018). The Ageing Report. Economic & Budgetary Projections for the 28 EU Member States (2016-2070). Economic and Financial Affairs, European Economy, Institutional Paper 079.

cxvi Eurocarers (2018). Enabling carers to care. An EU strategy to support and empower informal carers.

http://www.eurocarers.org/userfiles/files/Eurocarers%20Strategy_final(1).pdf

cxvii Alzheimer’s Disease International (2014). World Alzheimer’s Report 2014. Alzheimer’s Disease International: London, UK.

cxviii Farrow M (2010). Towards a Dementia Prevention Policy for Australia: Implications of the Current Evidence. Dementia Collaboration Research Centres and Alzheimer’s Australia: An Australian Government Initiative.

cxix Norton S, Matthews FE, Barnes D et al (2014). Potential for primary prevention of Alzheimer’s disease:an analysis of population-based data. Lancet Neurology, 13:788-794.

cxx X-Torp. Serious Game and Alzheimer’s Disease.

http://www.x-torp.com/fr/accueil/

cxxii United Nations (2017). Making innovation and technology work for women, New York, Sep 2017.

cxxiii Satizabal C, Beiser A, Chene G et al (2014). Temporal Changes in Dementia Incidence in the Framingham Study. Copenhagen: AAIC.

cxxiv The Lancet Commission (2017). Dementia prevention, intervention, and care.

cxxv EU Joint Programme – Neurodegenerative Disease Research.

http://www.neurodegenerationresearch.eu/

cxxvi European Prevention of Alzheimer’s Dementia Consortium.

http://www.imi.europa.eu/projects-results/project-factsheets/epad

cxxvii Models of Patient Engagement for Alzheimer’s Disease.

http://www.imi.europa.eu/projects-results/project-factsheets/mopead

cxxviii Real World Outcomes across the AD Spectrum for better care: Multi-modal data access platform.

http://www.imi.europa.eu/projects-results/project-factsheets/roadmap

cxxixAmyloid Imaging to prevent Alzheimer’s Disease.

http://www.imi.europa.eu/projects-results/project-factsheets/amypad

cxxxi Organising Mechanistic Knowledge about neurodegenerative diseases for the improvement of drug development and therapy.

http://www.imi.europa.eu/projects-results/project-factsheets/aetionomy

cxxxii European Commission (2018). EU Health Programme.

https://ec.europa.eu/health/programme/policy_en

cxxxv Alzheimer’s Disease International (2014). World Alzheimer’s Report4. Alzheimer’s Disease International: London, UK.

cxxxvi United Nations (2015). Older women and Beijing: 20 years on.

cxxxvii Baker, K.L. and Robertson, N. (2008), Coping with caring for someone with dementia: reviewing the literature about men. Ageing & Mental Health, 12(4) 413-422.

cxxxviii Alzheimer’s Disease International (2015). Women and Dementia, a Global Research Review. Alzheimer’s Disease International: London, UK.

cxxxix Global Alzheimer’s & Dementia Action Alliance (2017). Women and Dementia: A Global Challenge. London.

cxli Reitinger E, Heimerl K, Lehner E et al (2013). Gender-sensitive. Think about gender in dealing with people with dementia. A handbook for health and social professions. IFF for the Federal Ministry of Health.

cxlii Dementia Plans. Alzheimer’s Disease International.

https://www.alz.co.uk/dementia-plans

cxliii Council of the European Union (2008). Council Conclusions on public health strategies to combat neuro degenerative disease associated with ageing and in particular Alzheimer’s Disease. http://www.consilium.europa.eu/ueDocs/cms_Data/docs/pressData/en/lsa/104778.pdf

cxliv EU Joint Programme – Neurodegenerative Disease Research.

http://www.neurodegenerationresearch.eu/

cxlv Declaration of Cooperation among the Houses of the Parliaments of the Netherlands, Slovakia, and Malta. https://www.parliament.mt/media/83840/pr150832a.pdf

cxlvi European Commission (2007). Together for Health: A Strategic Approach for the EU 2008-2013. https://ec.europa.eu/health/ph_overview/Documents/strategy_wp_en.pdf

cxlvii Council of the European Union (2015). Council Conclusions on Supporting people Living with Dementia: Improving care policies and practices.

http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:52015XG1216(02)&from=EN

cxlix European Parliament (2009). Written Declaration on priorities in the fight against Alzheimer’s disease.

http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-%2f%2fEP%2f%2fNONSGML%2bWDECL%2bP6-DCL-2008-0080%2b0%2bDOC%2bPDF%2bV0%2f%2fEN

cl European Parliament (2009). Motion for a resolution on Joint Programming of research to combat neurodegenerative diseases.

http://www.europarl.europa.eu/sides/getDoc.do?pubRef=-//EP//TEXT+MOTION+B7-2009-0133+0+DOC+XML+V0//EN&language=en

cli European Parliament (2011). European Initiative on Alzheimer’s Disease and other Dementias.

http://www.europarl.europa.eu/sides/getDoc.do?type=PV&reference=20110119&secondRef=ITEM-006-10&language=EN&ring=A7-2010-0366

clii Alzheimer Europe (2015). Paris Declaration – 2006.

http://www.alzheimer-europe.org/Policy-in-Practice2/Paris-Declaration-2006

cliv World Dementia Council (2017). Our Vision and Mission.

https://worlddementiacouncil.org/our-work/our-vision-and-mission

clv World Health Organization (2012). Dementia: a public health priority. Alzheimer’s Disease International and World Health Organization: London, UK.

clvi World Health Organization (2015). First WHO ministerial conference on global action against dementia: meeting report, Geneva, Switzerland.

clvii World Health Organization (2017). Seventieth World Health Assembly.

http://www.who.int/mediacentre/news/releases/2017/dementia-immunization-refuguees/en/

clviii OECD (2015). Addressing Dementia: The OECD Response, OECD Health Policy Studies, OECD Publishing, Paris. https://doi.org/10.1787/9789264231726-en

clix OECD (2018), Care Needed: Improving the lives of people with dementia, OECD Health Policy Studies, OECD Publishing, Paris.

https://doi.org/10.1787/9789264085107-en

clx United Nations (2018). Sustainable Developmental Goals.

https://www.un.org/sustainabledevelopment/

clxi Lincoln P, Fenton K, Alessi C et al (2014). The Blackfriars Consensus on brain health and dementia. The Lancet, 383(9931).

clxii World Health Organization (2016). Global Health Estimates 2015: Burden of disease by Cause, Age, Sex, by Country and by Region, 2000-2015. Geneva.

clxiii Alzheimer’s Disease International (2014). World Alzheimer’s Report 2014. Alzheimer’s Disease International: London, UK.

clxiv National Institutes of Clinical Guidance (2015) Dementia, disability and frailty in later life – mid-life approaches to delay or prevent onset. NICE Guideline 16

https://www.nice.org.uk/guidance/ng16

clxv European Convention (2000). Charter of Fundamental Rights of the European Union.

https://ec.europa.eu/info/aid-development-cooperation-fundamental-rights/your-rights-eu/eu-charterundamentalrights_en