Impact Feature Issue on Aging and People with Intellectual and Developmental Disabilities

Aging with Developmental Disabilities:
Women’s Health Issues

Women generally live longer than men, so a larger number of the growing population of older people with developmental disabilities will be women. More research is needed to understand all the specific health issues of aging women with developmental disabilities and the ways to support a healthier life-style. However, it is important that older women with developmental disabilities receive the health-related information that is presently available in order to promote well-being and prevent health problems.

  • What effect does menopause have on women with developmental disabilities? Menopause is unique for every woman, including women with developmental disabilities. Menopause is typically thought of as the time when women stop menstruating. A woman is considered to have reached menopause if she has not had a menstrual period in one year. Menopause varies considerably from woman to woman, but it usually occurs around age 50-52. The transition to menopause is a process that begins as a woman's body produces less and less estrogen and eventually menstrual periods stop permanently. Near the time of menopause, periods become less frequent and bleeding decreases. Since this natural drop in estrogen may be inconsistent, women who are in their mid to late forties should keep a calendar of their menstruation to help note any irregularities in their periods. For most women, reaching menopause is a gradual transition. However, some women may experience menopause abruptly through surgical removal of both ovaries, radiation treatment, or by taking certain medications. Some women barely notice any changes related to menopause. Others may experience hot flashes, sweating, insomnia, heart palpitations, itchy skin, backaches, joint pain, headaches, bloating, weight gain, thinning hair and the growth of facial hair. Depression or other mental health changes may be associated with menopause for some women. However, the above changes may also have other causes not related to menopause, so a blood test for hormone levels may be necessary to determine if these changes are due to menopause.There is little research in the area of menopause and older women with developmental disabilities. However, several studies suggest that women with Down syndrome and women with epilepsy may reach menopause at an earlier age than women in the general population. For some women, seizure patterns change, for better or worse, around the time of menopause. It is unclear if this is from the effects of hormones or changes in anti-seizure drug levels.Women with developmental disabilities typically have not received information about the nature of menstrual periods and menopause. Therefore, it is important to inform women about menopause and to arrange for periodic evaluations by a health care professional with expertise in women's health.
  • What is osteoporosis and how does it affect women with developmental disabilities? Osteoporosis is a disease in which bones become fragile and are more likely to break. Unfortunately, many older women become aware that they have osteoporosis only after they break or fracture a bone. Estrogen helps maintain bone density. The natural drop in estrogen because of menopause increases a woman's risk for osteoporosis. Other risk factors include: advanced age, family history of osteoporosis, Caucasian or Asian ethnicity, very thin or small stature, physical inactivity, a condition which limits movement, early menopause, a diet low in calcium or vitamin D, high alcohol and/or coffee intake, over-dieting, excessive weight loss, and smoking. The more risk factors a woman has, the higher her chances are for getting osteoporosis. Women who have several of these risk factors should have a special bone x-ray to determine if osteoporosis is present and the rate of bone loss.Women with developmental disabilities may be at greater risk for osteoporosis and related bone fractures due to amenorrhea (absence of periods), earlier menopause, the use of certain medications (anticonvulsants, excessive thyroid hormones, steroids), and because they are more likely to be inactive or experience falls. Recent studies suggest that people with certain conditions like Prader-Willi or Kleinfelter's syndromes may be at increased risk for osteoporosis. Women with cerebral palsy may be at greater risk for developing a number of other bone, muscle, and joint-related diseases as they age, such as scoliosis (abnormal curvature of the spine) and spinal stenosis (neurologic problems associated with narrowing of the spinal canal).
  • Is heart disease a concern for women with developmental disabilities? Heart disease accounts for half of all deaths of women over age 50. Preliminary research suggests that it may be a leading cause of death for women with developmental disabilities as well. Generally, women are not diagnosed as early as men are, so their heart condition is not treated until it is much more serious. Major risk factors for developing heart disease include family history, hypertension, diabetes, lack of cardiovascular fitness, and smoking. Menopause also can increase the cholesterol levels in a woman's blood, which can lead to a greater risk of heart disease or stroke.
  • Are women with developmental disabilities at risk for cancer? Like heart disease, cancer is one of the leading causes of death for women, including women with developmental disabilities. Older women should receive regular screenings and examinations for early detection of breast, ovarian, cervical, and uterine cancer, especially if they are sexually active or postmenopausal. Women with developmental disabilities often do not receive these services. Frequently, families are unaware of this need and many health care professionals are inexperienced and/or untrained in working with women who have disabilities. In addition, many clinics and offices lack adaptive equipment to accommodate women with physical disabilities.
  • How is urinary incontinence related to aging? Around the time of menopause, some women may have difficulty in controlling their urination, leading to urinary "accidents." This is known as urinary incontinence. Women with a prior history of urinary incontinence may experience increased difficulty in controlling their bladder. For older women with cerebral palsy or other neuromuscular conditions, urinary incontinence may be related to both aging and their physical disability. As women age, changes in the urinary tract can also increase the risk of urinary tract infections (UTI). Frequent symptoms of a UTI include an increased need to urinate and a burning sensation or discomfort during urination. If left untreated, this can contribute to urinary incontinence and lead to more serious health problems.
  • What health-related supports and accommodations should women with developmental disabilities receive? Older women with developmental disabilities are generally uninformed about many of the changes that their bodies are, or will be, going through. Family, staff and close friends can play an important role in the health and well-being of women with developmental disabilities by:
    • Watching for behavioral changes that may indicate an underlying health problem, especially for women who have communication difficulties.
    • Ensuring access to appropriate health information and to health professionals who are experienced in diagnosing and treating age-related health problems for women with disabilities.
    • Ensuring that health professionals have accessible examination rooms and the proper equipment to examine women with disabilities appropriately.
    • Providing the necessary supports to address health concerns, including alleviating their fears and helping them feel comfortable with the health care professional and the examinations/procedures.
    • Ensuring that health information is available, understandable and explained in a way that is respectful.

Adapted and excerpted with permission from "Aging with Developmental Disabilities: Women's Health Issues" (1999) published by The Arc of the United States, and the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago.