Healthy ageing - adults with intellectual disabilities

Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues WHO/MSD/HPS/MDP/00.6
Healthy Ageing - Adults with Intellectual Disabilities
Women's Health and Related Issues
Authors
P.N. Walsh
T. Heller
N. Schupf
H. van Schrojenstein Lantman-de Valk
This report has been prepared by the Aging Special Interest Research Group of the InternationalAssociation for the Scientific Study of Intellectual Disabilities (IASSID) in collaboration withthe Department of Mental Health and Substance Dependence and The Programme on Ageing andHealth, World Health Organization, Geneva and all rights are reserved by the above mentionedorganization. The document may, however, be freely reviewed, abstracted, reproduced ortranslated in part, but not for sale or use in conjunction with commercial purposes. It may alsobe reproduced in full by non-commercial entities for information or for educational purposes withprior permission from WHO/IASSID. The document is likely to be available in other languagesalso. For more information on this document, please visit the following websites:http://www.iassid.wisc.edu/SIRGAID-Publications.htm and http://www.who.int/mental_health,or write to: WHO/MSD/HPS/MDP/00.6 Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues
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Acknowledgments
Working Group Members: The Report was prepared by a core team composed of Tamar Heller (USA), NicoleSchupf (USA), Henny van Schrojenstein Lantman - de Valk (Netherlands), and Patricia Noonan Walsh (Ireland)working in collaboration with the following colleagues: Kathie Bishop (USA), Nancy Breitenbach (France), AllisonBrown (USA), Janis Chadsey (USA), Orla Cummins (Ireland), Carol Gill (USA), Loretto Lambe (UK), BarbaraLeRoy (USA), Yona Lunsky (Canada), Michelle McCarthy (UK), Dawna Mughal (USA), Jenny Overeynder (USA),Pat Reid (New Zealand), Heidi San Nicholas (Guam), Janene Suttie (Australia), and Kuo-yu Wang (Taiwan). Theauthors gratefully thank Robert Cummins, Deakin University, Australia, for his careful reading of an earlier versionof this report and his very helpful comments; Marianne Vink for information communicated personally; and all thosecontributors who held focus group meetings in a variety of nations (including Australia, Canada, the UnitedKingdom, South Africa, and the United States) and who shared the results of these focus group meetings with us.
We are especially grateful to the participants in the Geneva Roundtable in April 1999 for their advice and support.
This report was developed as a draft and circulated to both Health Issues and Aging SIRG working group membersand selected others for commentary and amendments. The amended document became part of the working draftscirculated to delegates at the 10th International Roundtable on Ageing and Intellectual Disabilities in Geneva in 1999,and was discussed and amended further at this meeting. A set of summative broad goals was developed by the groupand appears in this paper, which itself became part of the comprehensive WHO document on ageing and intellectualdisability (WHO, 2000). The primary goal of this paper is to organize information on womenZs health issues in olderwomen with intellectual disabilities, and to present broad summative goals to direct further work in this area.
Partial support for the preparation of this report and the 1999 10th International Roundtable on Aging and IntellectualDisabilities was provided by grant 1R13 AG15754-01 from the National Institute on Aging (Bethesda, Maryland,USA) to M. Janicki (PI).
Also acknowledged is active involvement of WHO, through its Department of Mental Health and SubstanceDependence (specially Dr Rex Billington and Dr S. Saxena), and The Programme on Ageing and Health in preparingand printing this report.
Suggested Citation
Walsh, P.N., Heller, T., Schupf, N., & van Schrojenstein Lantman-de Valk, H. (2000). Healthy Ageing - Adultswith Intellectual Disabilities: WomenZs Health Issues. Geneva, Switzerland: World Health Organization.
Report Series
World Health Organization (2000). Healthy Ageing - Adults with Intellectual Disabilities: Summative Report.
Geneva: Switzerland: World Health Organization (WHO/MSD/HPS/MDP/00.3).
Thorpe, L., Davidson, P., Janicki, M.P., & Working Group. (2000). Healthy Ageing - Adults with IntellectualDisabilities: Biobehavioural Issues. Geneva, Switzerland: World Health Organization(WHO/MSD/HPS/MDP/00.4). Evenhuis, H., Henderson, C.M., Beange, H., Lennox, N., Chicoine, B., & Working Group. (2000). HealthyAgeing - Adults with Intellectual Disabilities: Physical Health Issues. Geneva, Switzerland: World HealthOrganization (WHO/MSD/HPS/MDP/00.5). Walsh, P.N., Heller, T., Schupf, N., van Schrojenstein Lantman-de Valk, H., & Working Group. (2000). Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues. Geneva,Switzerland: World Health Organization (WHO/MSD/HPS/MDP/00.6).
Hogg, J., Lucchino, R., Wang, K., Janicki, M.P., & Working Group (2000). Healthy Ageing - Adults withIntellectual Disabilities: Ageing & Social Policy. Geneva: Switzerland: World Health Organization(WHO/MSD/HPS/MDP/00.7).
Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues WHO/MSD/HPS/MDP/00.6
1.0 Background
This report is concerned with issues which are important for the health of women with intellectual and developmental disabilities as they grow older and age. The specific focus onwomen's health is in no manner meant to be dismissive or designed to minimize concerns relatedto menZs health issues. However, it is the position of the SIRG on ageing that women's healthissues have not received appropriate and sufficient attention, that women as they age are subjectto sex-related conditions and changes, and that in many instances the interests and needs ofageing women and women with disabilities are overlooked or neglected. Thus, this report isdesigned to explore factors related to well-being and quality of life for women, to examine anddefine sex-linked differences in their life experiences and opportunities and to define theirdistinctive vulnerabilities -including research on health status and access to health care.
2.0 Women's Health - a Global Perspective
The human rights of women and girl children are an integral part of universal human rights, according to the UN Vienna Declaration. Ensuring their full and equal participation in allaspects of life in society, without discrimination of any kind, is a priority objective for theinternational community. The United Nations Commission on the Status of Women promotesthe well-being and education of the girl child as a priority for global action in its policydocuments (1998). Further, the UN Standard Rules identify the availability of suitable medicaland health care as an essential perquisite if people with disabilities are to enjoy equalopportunities in the societies where they live (UN 1994).
Regional policies have adopted human rights as the basis for all actions related to the lives of persons with disabilities. Social policy within the European Union of 15 countries hasreplaced traditional care models of disability with a rights-based model. Human rights areexpressed as equal opportunities for all citizens, particularly those with disabilities, to take partfully in all aspects of everyday life in their own societies (CEC 1996). A respect for humandiversity should thus inform all aspects of social planning.
The WHO - Global Strategy on the promotion of women's health falls within this rights- based framework: The right of all women to the best attainable standard of health - as well astheir right of access to adequate health services - has been a primary consideration of the WorldHealth Organization (United Nations 1997b:10) There have been dramatic increases in life expectancy during the 2Oth century, due chiefly to tremendous advances in medicine, public health, science and technology. However,the quality of human life is as important as its length - perhaps even more important. Today,individuals are concerned about their health expectancy - that is, the years they can expect to livein good health (WHO 1997). Inequalities exist, based on sex, region and social status. Thepoorest, least educated people live shorter lives with greater ill-health. Globally, while lifeexpectancy increases, disability-free life expectancy seem to be stabilizing.
Priority areas for international action in health should be: a comprehensive chronic disease control package incorporating prevention, diagnosis; treatment and rehabilitation andimproved training of health professionals; fuller application of existing cost-effective methodsof disease detection and management, a global campaign to encourage healthy lifestyles; researchinto new drugs and vaccines and the genetic determinants of chronic diseases; and alleviation ofpain, reduction of suffering and provision of palliative care for those who cannot be cured (WHO1997:136).
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3.0 Lifespan Perspective: Ageing and Health
Recently, more attention has been given to the personal and social development of girls andwomen with developmental disabilities throughout the lifespan. This approach attempts tounderstand their experiences and their engagement with the tasks considered appropriate in theirfamily and culture at each transitional stage - infancy, childhood, adolescence, early - middle -and late adulthood, and old age. For example, young women in many industrialized societiestypically complete formal schooling and/or vocational training, find employment, achieve fullcitizenship and build personal friendships and intimate relationships. Some may establish homesand start childbearing. Women in late adulthood who have been employed may retire from theactive workforce, attend more to personal interests - depending on their income and talents - andperhaps devote themselves to grandchildren or other family concerns. And as they age, womenand men increasingly value good health and the independence and mobility it brings.
Populations are ageing. The number of people aged 65 years and above account for 7% of the world's population: two-thirds (65%) of those aged 80 and above are female. Globalstrategies must take gender differences into account. A major challenge will be to developinnovative ways of tackling the special health and welfare problems of elderly women (WHO1997:11). From the perspective of the WHO, healthy ageing is a global priority. The need tofocus on promoting health and minimizing dependency of all older people is a principle of actioncommon both to more developed countries - where 12.6% of the population is elderly - and todeveloping countries - where only 4.6% is elderly (WHO 1995:2).
Gender and health. The differential impact of gender on health is not static; rather it reveals itself as the individual grows and develops throughout his or her lifespan. Many risks tohealth are age-related: Men die earlier, while women experience greater burdens of morbidity anddisability. Women constitute the majority of both the carers and the older users in the healthsector. Supporting the female carers is a key health policy challenge (WHO 1995:6.1.5).
UN emphasis. The special situation of women is highlighted in current programs for older persons within development planning. 1999 was the International Year of Older Persons with thetheme, "Towards a Society for All Ages." A society for all ages recognizes the rights andresponsibilities of all age groups and makes it possible for older persons to live healthy,productive, economically secure lives (UN 1997a: SG/SM/6339 OBV/11).
Gender is recognized as a determinant of health. A gender approach to health includes an analysis of how different social roles, decision-making power and access to resources affecthealth status and access to health care. The special needs of women and current inequalities indelivery of health care are apparent. The WHO has targeted increasing its efforts towards: (1)advocacy for women's health and gender-sensitive approaches to health care delivery anddevelopment of practical tools to achieve this; promotion of women's health and prevention ofill-health; (2) making health systems more responsive to women's needs; (3) policies forimproving gender equality; and (4) ensuring the participation of women in the design,implementation and monitoring of health policies and programs, in WHO and within countries(WHO 1997:83).
Health status. Data gathered about the health of women living in developed nations indicate that while these women live on average up to about 80 years, many die prematurelybefore the age of 65 due to accidents or diseases which could largely be avoided by healthierliving or early detection. Special health issues are important to women at different stages of theirlives. Eating disorders have serious consequences for younger women, adult women confront Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues WHO/MSD/HPS/MDP/00.6
health problems related to HIV and AIDS, and among elderly women, the rising incidence ofosteoporosis has become a chief concern for women (CEC 1997:8). In contrast, the health statusof adult women in the developing nations is often compromised, resulting in shorter lifeexpectancies, greater rates of illness or disability-related conditions. poorer nutrition, and agreater incidence of problems more related to earlier life stages.
Policy focus on women's health. Policy-makers may embed the distinctive health needs of women throughout the lifespan in national health strategies. For example, in Ireland, theDepartment of Health formed a plan for women's health in consultation with many individualwomen and women's groups throughout the country. The plan, which is in keeping with WHOtargets for the health of women, recognizes that some groups of women - those with disabilities,for example -face particular challenges to maintaining good health. Lack of information, lack ofaccess to services and special difficulties related to advice about sexual and reproductive healthwere identified. The Irish Government document recommends direct consultation with womenwho have disabilities themselves in order to develop appropriate services (Government of Ireland1997:63).
4.0 Health, Ageing and Intellectual Disabilities : Cross-CulturalContexts
Increased longevity and improved services of all kinds have led to an unprecedented growth in the population of persons with intellectual disabilities. It is estimated that as many assixty million persons in the world may have some level of intellectual disability (WHO 1997).
Older people with intellectual disability have significant physical health needs (Cooper 1998; vanSchrojenstein Lantman-de Valk 1998, inter alia). The health of individual men and women withdisabilities as they grow older will reflect the social and economic circumstances shaping theirdaily experiences. Their fortunes may be especially at risk relative to those of their peers orfamily members. "It is in situations of dire poverty that household members are subjected toneglect, and people with disabilities are particularly vulnerable (Whyte and lngstad 1998: 43).
Access to health care. Informants from developing, rural or remote regions report that greater access to health care, information, proper treatment protocols, and the like, would allgreatly enhance longevity. Many individuals with more severe disabilities do not survive theearly childhood years. There may be no surgeons, or no facilities for neonatal care, and poorhealth outcomes for the elderly. In the Pacific region, for example, diseases such as measles, anddengue fever may be lethal. Given generally poor access to health resources, the population ofpeople with intellectual and developmental disabilities is more likely to be stricken and affectedby threats from disease. Cultural differences also influence health care across the lifespan. Localhealers and natural medicines may be a mainstay for a community. Further, cultures vary in theirunderstanding of, and attitudes toward, elders, as well as toward women. Such attitudes mayinfluence the availability and accessibility of health care for older women.
Socioeconomic contexts. Thus, healthy ageing does not arise and maintain itself in a vacuum. Social, political and economic environments interact with the daily lives andexperiences of individuals in a given society. Efforts to promote their health and well beingreflect this complex interaction. The quality of daily life experienced by individuals both reflectsand contributes to the quality of the society in which they live. Providing political environmentswhich foster healthy social relationships, trust, economic security, sustainable development andother factors related to advancing the health and well-being of citizens has been identified as apriority for governments. The quality of social relationships in a society has been documentedas part of health outcomes: healthier communities with greater social cohesion produce healthiercitizens (Lomas 1997). These and other factors make up a country's social capital, an essential WHO/MSD/HPS/MDP/00.6 Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues
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factor if states are to achieve the priorities for effective health promotion which are listed in theJakarta Declaration, such as increased investment in health development particularly for needygroups (Cox 1997:3).
5.0 Health and Ageing: Women's Health and Related Issues
In preparing this report, two key questions were posed in order to inform those charged with implementing global, regional and national health strategies including the needs of womenwith intellectual disabilities. These questions were (1) What is the current knowledge base aboutthe health of women with intellectual disabilities across the lifespan, especially among olderwomen? (2) What are the practices most effective in promoting good health and satisfactionwith services among women with intellectual disabilities? Three kinds of evidence were used to compile this report. First, information about global andregional trends, demographic patterns and socio-economic indicators were drawn from a rangeof policy and research documents published by bodies such as the World Health Organizationand other groups (Sections 2,3 and 4). Second, research literature in scientific publications wasreviewed and three summaries were prepared: these appear in Sections 6.1, 6.2 and 6.3. Third,colleagues in many countries contributed background information about local conditions in theirparts of the globe. Qualitative data were yielded by focus groups and other consultative meetingsof women with intellectual and developmental disabilities, their families, advocates andprofessional workers in many countries. The themes which emerged about their experiences ofhealth care and promotion appear in Section 7.
The final section of this report, Section 8, includes recommenda-dations for research, policy andpractice.
6.0 Summary Reviews Of Literature
Research summaries related to women's health and ageing are organized across four topic areasand appear in the following three sections. The editors' initials appear in parentheses. The firstsection (6.1) reviews evidence about cancer and sexual health (H. van S L- de V) andreproductive health (NS). The second (6.2) focuses on promoting health among ageing womenwith intellectual disabilities (TH), and the third section (6.3) addresses the social, economic andcultural contexts of health (PNW).
6.1.1.1 Among women with intellectual disabilities, the average age at onset of menarche issimilar to that of women in the general population. Most appear to have regular menstrual cycles.
Recent studies of gonadal function in women with Down syndrome have found distributions ofage at menarche and frequencies of women with regular menses that are much closer to thosefound in the general population than had been presumed from earlier studies (mostly ofinstitutionalized women). Between 65% and 80% of women with Down syndrome have regularmenstrual cycles, while 15 to 20% have never menstruated.
6.1.1.2 Methodological problems in studies of hormonal status during menstrual cycles inwomen with Down syndrome and other intellectual disabilities include small sample sizes,sampling of only a few cycles, and lack of control for the stage of menstrual cycle at which the Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues WHO/MSD/HPS/MDP/00.6
blood sample was drawn. Nonetheless, international studies have generally supported theconclusion that most cycles show evidence of ovulation and formation of a corpus luteum,suggesting that gonadal endocrine function is within normal ranges in the majority of womenwith intellectual disability.
6.1.1.3 Many women with intellectual disability are treated with psychotropic medication and/oranti-epileptic drugs (AEDs). Psychotropic medications can interfere with a number of hormonaland metabolic functions. A common finding is hyperprolactinemia in association withneuroleptic drug use. Prolonged elevations in prolactin can lead to declines in follicular (FSH)and luteinizing hormone (LH) release, leading to declines in ovarian function. Reduced gonadalfunction may lead, in turn, to menstrual disturbances, including amenorrhea or infertility andreduced estrogen release which may increase risk of age-related disorders associated withreduced estrogen levels. Seizures and AEDs may also influence memory and cognition throughchanges in neuroendocrine function. Elevated levels of sex-hormone binding globulin, FSH andLH have been described and long-term AED therapy has been associated with primary gonadaldysfunction and increased risk of polycystic ovarian syndrome.
6.1.2.1 Women with intellectual disability have the same sexual needs and rights andresponsibilities as do other women. However, care personnel and other carers are not alwaysadequately educated on this issue and may seek to limit opportunities for sexual activity. Olderparents may tend to ignore the sexual needs of their children. In many societies, general attitudestoward persons with disabilities and toward women specifically may further serve to deny ortrivialize sexual health concerns. Unfortunately, such attitudes may also carry over to women ofolder age and thus deny access to health services related to gynaecological concerns andfunctions and may lead to a dearth of health professionals who are willing or trained to addressreproductive health issues.
6.1.2.2 People who are sexually active are prone to sexually transmitted disease (STDs).
Education on symptoms of STDs and early treatment is necessary to avoid further transmissionand development of late-stage complications of the infection. Some STDs are characterized bychronic pelvic pain, vaginal discharge and abdominal pain, but other STDs may be presentwithout clinical manifestations (e.g., 65% of Clamydia infections). However, even when they aresymptom-free, infected women may transmit their infections and, untreated, may develop severecomplications. Infection with the HIV virus and development of AIDS is of special concern.
Currently, in countries from which information is available, it appears that HIV in persons withintellectual disability is mainly spread by men who have sex with men. However, because manyof these men also have sex with women, heterosexual spread of HIV may be increasing,following the pattern seen in the general population.
6.1.2.3 Women with intellectual disabilities need to be educated about safe sexual practices.
Line drawings or pictures, or other effective teaching materials, may be helpful in presenting safesex precautions and in initiating discussion about sexual activity in persons with limitedconceptual or verbal capacities. Women with intellectual disabilities may have poor skills innegotiating safe sex even if they are motivated to practice safe sex to avoid sexually transmitteddiseases. Women with intellectual disabilities are subjected to the same power discrepancies aswomen in the general, and requests for safe sexual practices (e.g., condom use) may be difficultto impose. Furthermore, many women with intellectual disability have low self esteem, makingnegotiations surrounding sexual activity more difficult. Practical skills may also be a problem.
Many persons with intellectual disabilities have motor problems which limit their ability to use WHO/MSD/HPS/MDP/00.6 Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues
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condoms effectively, as well as poor understanding of their proper use. Sexual education needsto include practice in condom diaphragm/pill use with instruction adapted to the capacity of thispopulation. It is crucial to recognize profound cultural differences in sensitivity to the content ofsuch education for women and in recruiting and preparing care staff and instructors.
6.1.3.1 In addition, both men and women with intellectual disability are more often victims ofsexual abuse than are persons in the general population. Most offenders are known to theirvictims and may include care personnel and other carers, family members or fellow residents whotake advantage of the person's inability to defend themselves or their lack of knowledge abouttheir sexual rights. Because of poor communication skills and lack of knowledge about theirrights, people with intellectual disabilities make also experience difficulty in telling carers aboutthe abuse. Such abuse may continue for years before any signs are given. Education about sexualabuse should take place in settings provided by carers who are familiar and respectful of theperson with an intellectual disability and who can encourage full and frank discussion aboutabuse (see: McCarthy and Thompson 1998).
6.1.4.1 In a number of countries, women with intellectual and developmental disabilities are aslikely to marry and to bear children as are their peers. While little research has addressed fertilityin women with intellectual disability, it is reasonable to assume that most adults are fertile unlessthey have a disorder that affects genital organs or brain regions responsible for hormones thatregulate ovarian function. For example, only a few births to men and women with Downsyndrome have been documented. In addition, in some countries a majority of women withintellectual disabilities use some form of contraception. Oral contraception is preferred, with lowdose combinations of progestins and estrogens. Depot progesterones are also widely used ascontraceptives. Their advantage stems from the fact that they need to be administered only fourtimes a year. However, irregular vaginal bleeding ("spotting") and effects on cholesterolmetabolism that might increase risk for coronary heart disease need to be considered.
6.1.5.1 Therapeutic amenorrhea may be used in women with intellectual disability who areunable to manage menstrual hygiene effectively or in women who show self-injurious behaviorrelated to menstruation. The most common form of therapeutic amenorrhea is suppression ofmenstrual cycles with lynestrenol. In one report, a Finnish gynaecologist noted that 66% of hispatients with intellectual disabilities had been prescribed lynestrenol at some time in their life.
Alternatively, endometrial ablation, abrasion of the inner layer of the uterus, may be used tosuppress menstruation and establish therapeutic amenorrhea. More radical procedures, such ashysterectomy (removal of the uterus) may also be used to prevent pregnancy. In the past,sterilization was widely used to prevent pregnancy, often without the consent of the person withan intellectual disability. In more developed countries, guidelines for sterilization now requireextensive documentation of the medical rationale for the treatment, including documentation ofinformed consent procedures.
6.1.5.2 Endometrial ablation, hysterectomy and sterilization, while effective, are irreversible,raising legal and ethical concerns about these procedures. Determination of the perceivedproblems surrounding management of menstruation and/or fertility should be medicallydocumented and should be undertaken as much for the information of the women herself as for Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues WHO/MSD/HPS/MDP/00.6
6.1.6.1 Very little is known about menopause in women with intellectual disability. Limitedstudies have reported on the median age at menopause and no study has systematically trackedchanges in hormones and ovarian function with age in a large group of women with intellectualdisabilities. Thus, there is very little information on how decreases in hormones after menopausemay affect health and cognitive ability. Studies of menopause have found that the median age atmenopause was 3 to 5 years earlier in women with intellectual disability compared with womenin the general population. Women with Down syndrome and women with Fragile X appear tohave especially early onset of menopause.
6.1.7.1 Osteoporosis. Osteoporosis is considered to be characteristic of disorders that increaseafter menopause and are related to estrogen loss. In addition, long-term use of anti-convulsantsis a risk factor for osteoporosis. In women with osteoporosis bone mass slowly declines over theyears to produce thinner and more porous bones, which are weaker than normal bones. Post-menopausal bone loss is associated with wrist fractures in about 15% of women and with spinefractures in 20-40%. The most serious complication of osteopenia is hip fracture, which occursin 15% of older fair-skinned women and causes high rates of morbidity and mortality. Clinicaltrials of estrogen and bone density have consistently shown that estrogen prevents or delays boneloss when taken within 5 years of surgical or natural menopause. Osteoporosis and an increasedrisk for fractures was also found in younger women with intellectual disabilities who had eitherhypogonadism, a small body size, or Down syndrome.
6.1.7.2 Breast Cancer. Risks for breast cancer and cervical cancer also increase with age.
Whether or not women with intellectual disabilities have the same risk for these cancers aswomen in the general population is still being debated, and further research is needed to addressthis question. Women who have never been pregnant - including many women with intellectualdisabilities - may be at higher risk and thus screening is especially important (M. Vink: personalcommunication). But screening for these cancers may present special problems. Currentguidelines for screening for breast cancer recommend regular mammography in women over 50years of age (every 1 to 2 years). Problems for effective participation in screening programsamong women with intellectual disability include difficulties in understanding and co-operatingwith the procedures, problems of transportation to screening sites and, often, musculoskeletalproblems which make accommodation to the mammography machines an uncomfortable andfearful experience. Most physicians experienced with mammography in women with intellectualdisability emphasize that health and nursing personnel need to take sufficient time for womento familiarize themselves with the machines and with the procedures to participate effectively.
However, economic pressures under extant proprietary or national health care systems in certainnations may limit the willingness of physicians and their staff to provide the necessary time andtraining to achieve successful levels of co-operation. In the Netherlands, all women within amunicipal administration system are invited by postal code and birth date for breast cancerscreening, but illiteracy and poor literacy may limit participation. ln other countries, the screeningprogram does not include women who are not able to pay for the procedures. In general, womenwith intellectual disabilities receive fewer opportunities for screening for breast cancer than dowomen in the general population. This may be particularly insidious in nations that have nosystematic screening procedures as women with intellectual disabilities may be at particular risksince most may have limited access to available health practitioners, and if access is not WHO/MSD/HPS/MDP/00.6 Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues
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available, such screenings may never be carried out 6.1.7.3 Cervical cancer. Guidelines for screening for cervical cancer recommend screening bycervical smear testing once every 2 to 5 years for women between the ages of 30 and 60 years.
Sexual activity is associated with increased risk for cervical cancer, so that women withintellectual disability who are have no experience of sexual activity may possibly be excludedfrom screening programs. Poor receptive and expressive language, discomfort and fear maycreate difficulties in achieving co-operation in pelvic examination and obtaining cervical smearsin some women with intellectual disabilities. In some nations, lack of available female physiciansmay further limit such examinations as societal mores proscribe such contact by male physicians.
Further, given sensitivities to genital contact, and lack of familiarities of such procedures bywomen with disabilities under these circumstances, no such screenings may ever be undertakenin certain nations, further increasing risk.
6.1.7.4 Heart disease. The frequency of heart disease is lower in menstruating women than inmen of the same age, but after menopause the frequency of heart disease is the same in womenas in men. Many studies have shown that the risk of a coronary event is reduced by about 50%in postmenopausal women using oral estrogen compared with women not taking oral estrogens.
It is thought that this decrease in coronary heart disease is related to the ability of estrogen toprevent coronary artery disease and prevent the build-up of some types of cholesterol in thebloodstream. Other age-related conditions that appear to occur with increased frequency inwomen with intellectual disability are thyroid problems, sensory impairment, heart rhythmdisorders and musculoskeletal disorders.
6.1.7.5 Alzheimer's disease. Ovarian hormones such as estrogen are also important to maintainbrain function in regions of the brain affected by Alzheimer's disease. Some scientists havesuggested that the loss of estrogen after menopause may increase risk for the cognitive declinesassociated with Alzheimer's disease, although this is still controversial. Several studies havefound that women who took estrogen after menopause had a decreased risk and later age at onsetof AlzheimerZs disease. Epidemiological studies on the sex-linked prevalence of Alzheimer'sdisease are equivocal, with some showing a higher rate among women with Down syndrome, andothers showing no discernible patterns between men and women with intellectual disabilities ofother etiologies.
6.1.7.6 Menopause. Women with intellectual disabilities may have an earlier age of menopausewhich may place them at increased risk for these estrogen-related disorders. In addition, thefrequency of estrogen or hormone replacement therapy is much lower in women with intellectualdisabilities than in women in the general population, so that they do not receive the same degreeof preventive and therapeutic intervention as women in the general population.
6.1.7.7 Psychiatric illnesses. Older women in general are reported to often experience moreinstances of depression and other life stressor-related reactive behaviors indicative of psychiatricdifficulties. As reported by the WHO/IASSIDZs report on Biobehavioural Issues, this is often thecase among older women with intellectual disabilities as well. This paper should be accessed fora more detailed explanation of this problem area.
Health care paradigms are expanding from an historical emphasis on treatment of disease conditions to a more expansive focus on health promotion through healthy lifestyles, preventivehealth care, and positive environmental conditions. There is a growing body of research Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues WHO/MSD/HPS/MDP/00.6
associating successful ageing and disease prevention with health behaviors and environmentalconditions. Among women with disabilities health promoting activities and settings can lead toenhanced useful functioning, prevention of secondary disabling conditions, and an increasedquality of life. Researchers have only recently begun to explore the conditions promotingoptimum health among older persons with intellectual disabilities, and even less among womenwith intellectual disabilities. In a national survey conducted in the United States, the mostcommon chronic health problems noted for older adults with intellectual disabilities were highblood pressure, osteoarthritis, and heart disease. Women with intellectual disabilities who surviveinto old age are most likely to die of heart disease. Older women with intellectual disabilities,particularly women who have a lifelong history of anti-epileptic medicine may be moresusceptible to osteoporosis than the general population.
Proper nutrition, exercise, and access to preventive health care can increase health and longevity. Yet women with intellectual disabilities receive less preventive health care thanwomen generally and have highly sedentary lifestyles. Among adults with intellectual disabilitiesobesity and cholesterol levels are higher than for the general population. This is particularly truefor women and for adults living in independently. Among adults with Down syndrome, a UnitedStates study reported that nearly half of the women and nearly one third of the men had morbidobesity. A study of women with intellectual disabilities living in residential facilities found thatwomen were more likely than men to have malnutrition or obesity. Data from the United Statestells us that older adults with intellectual disabilities living at home exercise less frequently thanother older adults. In addition to the negative effects on health, the high levels of obesity and thelow levels of physical activity reported among adults with intellectual disabilities can createbarriers to successful employment, participation in leisure activities, and performance of dailyliving activities. Other health behaviors, in addition to diet and exercise, which have been shownto affect health among the general elderly population, such as smoking, alcohol use, medicationmanagement, and stress management, have been rarely studied among women with intellectualdisabilities.
6.2.3 Access to preventive health care varies widely by country. Data from the United Statesindicates very low levels of health screenings for older women with intellectual disabilities,including mammograms, breast examinations, and pap smears, particularly for women living inthe community. Reasons for lack of preventive health care include lack of private insurance,attitudinal barriers of health care professionals, insufficient health education, and fear ofexaminations, and communication difficulties experienced by women with intellectualdisabilities.
6.2.4 To promote healthy behaviors and preventive health care among older women withintellectual disabilities, health education is needed for the women with intellectual disabilitiesand for health professionals. Women with intellectual disabilities may lack basic knowledgeabout their bodies and about health and ageing. They may be unaware of how their currentlifestyles and behaviors can have an effect on their overall health and well-being. Also, healthprofessional often do not communicate effective strategies for health promotion to women withintellectual disabilities or their carers.
The socio-economic context - for example, level of income, employment status and family circumstances - and also the cultural environment in which individuals develop and ageinfluence health outcomes. Differences in life expectancy, income and access to health care areconspicuous when outcomes for women in developing countries are compared to those in the less WHO/MSD/HPS/MDP/00.6 Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues
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developed countries - where the majority of all persons with intellectual and developmentaldisabilities live. While these topics have been explored among the general population to someextent, little empirical research is available concerning women with intellectual disabilities.
6.3.2 Very few women with intellectual disabilities marry, even in the more developed countries,and few will have the opportunity to experience gender roles which are typical in their culturalsettings. Few bear children. As a consequence, in later life they lack key sources of informalsupport and care. The importance of the role played by brothers and sisters in the developmentand well-being of adults with intellectual disabilities across the lifespan has been recognized. Yetthe extent and function of such relationships have only recently been studied empirically. Womenwith intellectual disabilities are also less likely to become primary family carers, althoughincreasingly those who become middle-aged may be called on to care for an elderly or frail parentwho has heretofore provided care for them. Some questions remain: for example, can respite care- an important element in formal care - help to maintain or promote health and well-being amongwomen with intellectual disability, either directly or through its impact on family members? 6.3.4 While it is recognized that friendships and social networks contribute to the health andwell-being of women in the general population, the specific elements of this contribution in thelives of women with intellectual disability is less well understood. Adults with intellectualdisability tend to name significantly fewer individuals and to have more dense social networksthan other adults. Those who receive formal services describe social networks filled largely bymembers of staff. In addition, their networks include more family members than friends -although men with intellectual disabilities are likely to include fewer friends. Adults also tendto name family friends as their own. While empirical evidence suggests that adopting multiplesocial roles may help to protect women from threats to their well-being, women with intellectualdisability are much less likely to have such varied life opportunities.
6.3.5 The favorable impact of employment on the well-being of employees in terms of income,personal satisfaction, esteem, friendships and health has been well-documented in the moredeveloped countries. Less is known about the impact of employment status on the health andwell-being of adults with intellectual disabilities, although this has been recognized as animportant area for continued research.
6.3.6 The day-to-day experiences of women in the workplace, as well as the expectations ofsupervisors, employers and co-workers have been explored in a few recent studies. It has beenreported in Australian and North American studies that women with intellectual disabilities incommunity employment are more lonely at work than men. Initial findings of a longitudinal studybeing carried out in France (GRADIOM) suggests that staff members and medical personnel insheltered workshops appraise women with intellectual and developmental disabilities as beingold some years in advance of the men of similar age with whom they work. Whether thisperception is due to cultural factors or to differential working conditions or access to health carehas not yet been determined. In general, the uptake of employment, patterns of occupation, andbenefits of employment among women with intellectual disabilities across the lifespan have notbeen investigated systematically and across cultures.
6.3.7 It is not known, for example, whether in developing countries women with intellectualdisability share in the "feminization of the work force" trend which has been apparent in moreindustrialized countries, notably among women with disabilities. Some findings suggest thatpatterns of employment and employment outcomes differ for women with intellectual disability.
Less is known about the employment experiences of women in developing countries, where apriority is to acquire skills so as to contribute to family - and thus, their own - livelihood.
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6.3.8 While employment may bring benefits in terms of income, self-esteem and communityparticipation, it may not be without hazard. Because of the generally unskilled nature of theoccupations assigned to women with disabilities who may be employed, they are more likely tobe exposed to occupational hazards and toxic substances. Many occupational diseases can beprevented through improvements to the work environment and reduction of harmful exposureto toxins and other substances. For example, silicosis is common in many dust-generatingactivities such as ceramics production, prompting a joint lL-WHO initiative planned to eliminatethis disease. The long-term impact of these occupational hazards on the health of women withintellectual or other developmental disabilities who are in the labor force has yet to beinvestigated.
6.3.9 Although, it is likely that women with intellectual disabilities who have achievedemployment in the regular labor force subsequently take a more active part in society, outcomesfor them in terms of greater social inclusion - a core social policy within the EuropeanCommunity, for example - have yet to be determined. Accordingly, there is little evidence toindicate how their health and well-being may be promoted through wider participation in society.
7.0 Qualitative Information
This section presents a summary of key issues identified during a range of focus group datacollections, as well as at a variety of meetings or consultations carried out with women withintellectual disabilities, their family members, advocates and friends. While the procedures variedslightly, some commonalities emerged when data from all the groups were explored. The issueswhich arose in several different sites have been blended here, partly to protect the individualswho offered their assistance so readily. The findings appear under five headings selected becausethey reflect the emergent concerns of the women informants: ageing and disability (7.1),treatment (7.2), training for professional workers (7.3), health promotion (7.4), and personal andpractical supports (7.5).
7.1.1 Determining ones age is often difficult for persons with limited experiences or withintellectual disabilities. For example, only half of the participants in one group could tell theircurrent age. Thus, self-defining ageing over the life course may be a difficult skill. Life coursechanges, such as acknowledgment of the basic physical changes that take place over time, frombaby to girl to teenager to woman, such as the body growing bigger as a person gets older andgirls getting periods as a teenager; concern over changes in family relations and issues related toageing parents as they get older - sometimes mostly sad experiences (e.g., grief over death of aloved one and negative changes in relationships with family members) can be difficult withoutoutside validation. To some persons with intellectual disabilities, "getting old" evokes notionsof becoming sick and dying. However, some adults do recognize that not to do so depends on aperson's health status and how often she visits the doctor. In many of the focus groups, there wasgenerally a lack of appreciation of anything that would be considered "good" about growingolder.
7.1.2 A related perception emerged in one group, which found that often there is a lack of self-identification among older women as being someone with a disability, or a negative perceptionof people with disabilities. The desire to bear a child, but a child without any disabilities, wasapparent for some women. Another group found that many older women with intellectualdisabilities have previously been institutionalized for years. They have grown up with poor diets WHO/MSD/HPS/MDP/00.6 Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues
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and a lack of exercise, thus increasing their risk of osteoporosis.
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7.2.1 Giving consent to undergo medical procedures or treatment raises complex issues whichdiffer from country to country. Consent issues for procedures such as a breast biopsy are a majorproblem for women who may have difficulty understanding the procedures themselves or therelative merits and disadvantages of a particular form of treatment. Mental health issues inrelation to sexual abuse of women are still untreated or under-rated. Alcohol and drugdependence and disorders such as depression among women living alone or with their familiestend to be treated as behavioral disorders. As a result, appropriate treatment is not provided.
There still is a tendency by doctors to apply a "band-aid" approach - such as prescribing acalming medication - rather than address the underlying problems. Equipment for mammogramsand other tests that are recommended for the general population are often not suitable for womenwith physical disabilities such as spina bifida or for women with disabilities who are very shortin stature, who have contractions or similar conditions. Even the examination tables are notaccessible for many women with physical disabilities or who are afraid of the examinationprocess.
7.2.2 Dental care for women with disabilities was reported as an issue by a number of groups.
Few dentist offices are accessible and the equipment is rarely suitably adapted for adults withphysical disabilities. There is also still a fear of the dental process among many women. Carepersonnel report an increase in swallowing disorders, seizures, asthma, reflux, and functioningloss in older women. These phenomena have only been observed and there is a need for studiesto determine whether these observations accurately reflect prevalent health conditions. Little isknown about osteoporosis in women with disabilities and little is known whether certainmedications such as steroids and epilepsy medications can increase the risk of osteoporosis.
Focus groups report a need for training on sexually transmitted disease, especially AIDS.
7.2.3 Complex issues such as estrogen replacement are still controversial for the generalpopulation of women: it is even more difficult to determine appropriate treatmentrecommendations for individual women. There is still a tendency to perform possibly unneededhysterectomies, sterilizations, and procedures such as dilatation and curettage when there is noone to advocate or advise the woman with a disability. Much of the research available has beenbased on populations of men rather than women - for example, studies on heart disease. It isdifficult to monitor and advise women with disabilities or to make decisions about health whenthe information is not available. Studies are few that involve women themselves and theinformation from those that are conducted needs to be made available widely for women withdisabilities.
7.2.4 Decisions related to pap smear tests include an assumption that women who appear to havebeen sexually inactive have no need for tests. And yet, who is to decide whether the woman hasever been active or may have been sexually abused in the past? The need for information relatedto HRT - hormone replacement therapy - including risk factors, cost of ongoing treatment, typesof HRT available (e.g., tablets, patches, implants). Women who have been sterilized at an earlyage (parents have been able to give consent for minors under 18 years of age to have ahysterectomy) may have different needs in older age than women who may choose to besterilized at a later age.
7.2.5 It is helpful if older women with intellectual disabilities can recognize the differencesbetween women and men in terms of different body parts (including genitalia); that menstrualperiods are something only women have; and that menopause is a time when a woman's period WHO/MSD/HPS/MDP/00.6 Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues
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stops. Often, older women do not understand why the menopause takes place. Others may lacka way to describe common physical changes that women experience related to menopause1 suchas hot flashes and irritability, or to understand what is involved taking medication such as HRT.
Generally, women with intellectual disabilities experience an overall discomfort about, andreluctance to discuss, traditionally taboo subjects, such as sexuality, and in general talking abouttheir own bodies.
7.3.1 Physicians and their staff do not often understand disabilities or have any education ondisabling conditions. Community health professionals may not have experience in health care andconcerns related to people with developmental disabilities in general, and older women inparticular. The offices where medical care is provided are often rushed with little time spentexplaining the service system, health issues and other matters. Many women in the focus groupsreported that there is not enough time in the office preparing women with disabilities forexaminations and helping each woman understand health related issues. Even family membersare rushed through visits to physicians.
7.3.2 Training for health professionals, staff and families on how to better communicate healthissues to women with intellectual disabilities was urged by a number of groups. This was definedfurther as training for health professionals that will sensitize them to the concerns expressed bymany of the women with intellectual disabilities (i.e., painful or uncomfortable exams andprocedures) and how to facilitate more positive health experiences for them.
7.3.3 There are often many unanswered questions regarding the purpose of having medicalexaminations, such as ophthalmic, dental and pelvic exams, and mammograms. Many womenreported feeling discomfort or pain during mammograms or pelvic exams. They reported beingaccompanied to physician visits by care personnel, but often the care personnel were not helpfulin explaining the physical procedures.
7.3.4 Women in the focus groups noted that health examinations can be made more pleasant, bydoing such things as controlling their own behavior (lying still, holding breath), but many wereless certain of how the physician or other medical personnel might help. There were mixedreactions on how physicians treated women: some reported that physicians and other healthprofessionals were nice to them, while others disagreed.
7.4.1 Focus groups often emphasized the need for prevention of onset or worsening of a diseaseor condition among women with intellectual disabilities. Proactive lifestyle changes can providehealth benefits for women with intellectual disabilities who have not led healthy lives, even ata later age. The systematic use of periodic screening checklists for women has been found to beof benefit to general practitioners.
7.4.2 When health services are available, women often report that they experience generalconfusion over what procedures physicians would do during both regular and specialized exams,and what was the purpose the different types of examinations. In some nations, aid in preparingfor medical examinations is provided by care personnel. In the United States, for example, suchpersonnel -often nurses - help to prepare women for medical examinations and other treatmentsThis is often the case if the woman is enrolled in a residential or day services program. However,it has been noted that if the woman is living on her own in the community, there is no one who Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues WHO/MSD/HPS/MDP/00.6
takes responsibility for this training or advocacy.
7.4.3 Wellness as a lifestyle was often discussed. Participation in a exercise regime andrecognition of the importance of regular exercise for staying healthy as they get older was anapparent need. Many women knew that is important to eat the right foods in order to stay healthy,but were not aware that many of the foods that they currently eat would not fit the model of a"healthy" diet. Efforts to encourage women to understand that smoking can cause cancer and thatit is not a healthy behavior were recommended. The fact that older women (and men) withintellectual disabilities are less likely to engage in active sports was noted .
7.4.4 Education for women with intellectual disabilities was recommended, including topicsconcerning women's health issues and general age-related changes, as well as about specifichealth issues related to their disability and/or to ageing. Many of the women reported watchingand/or listening to television and radio. Given this, it was agreed that appropriate healthinformation could be developed utilizing a variety of materials, including audio-visual andrelated computer-based multimedia - for example, WEB-TV.
7.4.5 Access to health promotion may be constrained if women do not have suitable support.
Generally, women who are not affiliated with (service) agencies do not have anyone to help themnegotiate the complex health system and payment processes.
7.5.1 Women capable of occupation or employment should be assisted to achieve or maintainoptimal functional and employment capacity. With regard to employment and access to healthcare, women with disabilities should be able to work without compromising their entitlement tohealth services. To help in manageing work assignments, personal assistance services should beprovided.
7.5.2 Medical services for women with intellectual disabilities should be provided consistent withcurrent standards of practice and such medical services should be sufficient to achieve theirpurpose. When income is used to determine eligibility or degree of medical service receipt,medical services for which individuals may be eligible should be provided at no expense or atminimum on a sliding fee scale. Further, with regard to medical services, a patients' bill of rightswhich addresses the needs of people with disabilities should be available. Person-centered,holistic approaches to health care need to be adopted.
7.5.3 Supports for women with intellectual disabilities are important so that they might beencouraged to explore perceptions of themselves as women and their personal issues related tosexuality in a way that is respectful and breaks the apparent "taboo" surrounding thesediscussions. They may gain support, further, by learning ways to communicate their concerns,including an understanding that they have the right to express feelings of discomfort and/or toask questions of health professionals. Finally, women with intellectual disabilities should behelped to understand more fully and develop more positive perceptions about being a women,having a disability, and getting older.
7.5.4 Although some areas on the world are comfortable exploring the myriad of women's issues,others are not There are many important matters related to women's health care that need to bediscussed. One is that access to health care is often arbitrary. Even when it is allocated, therequirements of special groups of women with intellectual disabilities may be poorly understood,placing them at a disadvantage. Women with multiple disabilities may have even less access to WHO/MSD/HPS/MDP/00.6 Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues
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health care than their peers with minimal disabilities, especially to reproductive health care.
Professionals may have had little contact with women who have profound disabilities and littlesensitivity to their needs throughout the lifespan and those of their family carers. Often, womenwith physical or multiple disabilities and their advocates spoke of their distress when theyencountered various medical investigations and procedures, and the resulting distress whichcould prevent them from receiving appropriate treatment.
Ethical issues related to informed consent to medical treatment are far from uniform. Both good and poor practices may be found in all regions. Advances in professional training andadequate financial resources do not guarantee good practice. Too often, prevalent is the beliefthat women of reproductive age should be sterilized routinely in order to prevent transmissionof conditions giving rise to disabilities.
8.0 Policy and Service Recommendations
A number of recommendations related to women's health policy and practices in health andhealth-related services are proffered: In some nations, sterilization is used to control a woman's sexuality or for the benefit of carersand not with regard to the woman's preferences or health. Each nation should adopt guidelinesregarding the sterilization for women with intellectual disabilities, especially addressing the issueof informed consent to this procedure. Sterilization should never be applied as a broad socialpolicy and without the woman's consent.
Service providers should determine how the health status and health care practices of parents andcarers may be associated with those of women with intellectual disabilities so as to evaluate theirhealth needs and plan appropriate interventions within a family context.
Health promotion strategies which recognize the cultural and social context and which aresensitive to the needs of women with an intellectual disability throughout their lives should bedeveloped in consultation with them. At the same time, a greater understanding of age-relatedchanges should be advanced.
Health care professionals should receive training in order to deal sensitively and effectively withwomen's health needs. Training should be targeted according to local conditions. In somecountries, primary health care workers should be trained to offer essential information andguidance if physicians or other professionals working in health care systems are unable to do so.
Supports for living and working in the community should take account of the distinctivecharacteristics and needs of women with intellectual disability at different stages in their lifespan.
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9.0 Research Priorities
Several important areas of research in sexual and reproductive health are suggested. In manyinstances, these inquiries should be undertaken within the context of large scale multinationalstudies.
This topic has received scant research attention and many questions remain unanswered,including: How many women with intellectual disabilities have regular/irregular andfertile/infertile menstrual cycles? How do risk factors such as having Down syndrome, shortstature and hypogonadism - and maybe other risk factors- influence this? To what extent doanticonvulsants and neuroleptics influence these? Life stage related changes affect women with intellectual disabilities in the same manner as theydo other women. Yet, little research has been directed toward these critical transition stages.
Many questions remain, such as: How many women with intellectual disabilities have an earlieronset of menopause? What are risk factors for that? STDs are a public health problem at any age. Women with intellectual disabilities are no lessvulnerable to them. Yet, research has been negligent in addressing the particular issues relatedto STDs and women with intellectual disabilities. It is necessary to know more, for example:What are effective strategies for educating women with intellectual disabilities on sexuallytransmitted diseases? The area of reproductive health, particular in regard to what practices may affect women as theyage is virtually untouched in the literature on women and intellectual disabilities. An importantquestion is, Are women with intellectual disabilities more or less at risk from certain forms ofcancer? More information in needed, such as: How can women with intellectual disabilities beguided on making their own choices in having children and/ or using contraceptives? What arethe rights and responsibilities of guardians in supporting the choice process? In a number of countries, medical personnel are trained to become specialists in the area ofintellectual disabilities, yet practically none have emerged as leaders in the area with regard towomen's health. The dearth of trained practitioners who can serve as leaders in women's healthis an impediment to realizing many health targets. Universities, medical training institutions andother settings should expand their focus in this area, particularly expanding their research efforts.
There is a need to know more about how to more effectively deliver services to women withintellectual disabilities. For example: What training packages are effective in educatingphysicians, and especially gynaecologists on the special needs of women with intellectualdisabilities? WHO/MSD/HPS/MDP/00.6 Healthy Ageing - Adults with Intellectual Disabilities: WomenZs Health and Related Issues
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What is an appropriate strategy for making PAP smears in women with intellectual disabilities?Are there groups of women with intellectual disabilities who need not to be invited for thispreventive measurement? What is known about the prevalence or course of cervical cancer in thispopulation? Research must help to determine the incidence and impact of osteoporosis and osteoarthritisamong ageing women with disabilities, notably in terms of their social inclusion and generalwell-being.
Long-term effects on health should be investigated among ageing women. How diet and nutritionof women with disabilities relate to the incidence of heart disease, and the interface oflongitudinal drug therapy with lifelong health are two such areas.
Overall, to date there have been few empirical studies investigating the impact of theiremployment status or levels of social inclusion on the health and well-being of women withintellectual disability at different stages in the lifespan, and across different social and culturalsettings. Further, no research has been conducted on how to integrate women's health issues intothe medical practice of nations where women have a devalued status. This is an important, ifoften complex, area for continued research.
Women with an intellectual disability are generally of low socio-economic status. Researchshould be undertaken to determine the special needs of such women that need to be met in orderfor them to achieve an equivalent level of physical and subjective well-being to non-disabledwomen and men living in similar circumstances.
10.0 Summary
Promoting womenZs health across the lifespan may be seen as part of global strategy. Three majorthemes arise in this report.
First, our understanding of the distinctive needs, vulnerabilities and sources of well-being forwomen with intellectual disabilities must be addressed vigorously. There are compelling researchpriorities in the areas of reproductive and sexual health, and in health promotion practices, ifhealth strategies founded on scientific evidence are to be pursued. Research questions of greatimportance to the health and ageing process among women generally have not been investigatedamong women with intellectual disabilities.
Second, a notable feature of WHO policy is the direct involvement of women themselves ininforming, shaping and evaluating health interventions. This report offers examples of howwomen with disabilities may be directly involved as full partners in the formation of healthstrategies and interventions, and thus as contributors to their own well-being as they age.
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Third, it is evident that health resources are finite. The distinctive health care needs and also therelatively low socio-economic status of women with intellectual disabilities must be understoodin order to inform the allocation, or the re-allocation, of scarce resources at global level.
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