The management of menopause for women with intellectual disabilities


Cosgrave et al.(1999) have established that women with an intellectual disability experience menopause at an earlier age than women of the general population. It has been noted by McCarthy and Millard (2003a) that there is inadequate information and support available for women with an intellectual disability as they experience the onset of menopause. This is of particular concern when one considers that there are 4839 women with intellectual disability aged 35 and over in Ireland (Barron and Mulvaney 2004). Very little research has been carried out with regards to how the menopause affects the women with an intellectual disability (Martin et al. 2001). The purpose of this article is to provide information to assist carers to recognise the onset of menopause and to help with the management of the related symptoms associated with peri- to post- menopause in women with an intellectual disability.

Definition of Menopause

The World Health Organization’s definition (WHO, 1994)
Peri-menopause: The time leading up to menopause with endocrinological, biological and clinical features of approaching menopause, ending one year after the last menstrual bleed.
Menopause: Permanent cessation of menstruation resulting from the loss of ovarian follicular activity.
Post-Menopause: The time following the date of last menstrual bleed, which cannot be determined until 12 months of spontaneous absence of bleeding has been observed.

Causes of Menopause

In women, from around the age of 35 years, the reproductive cycle becomes less predictable and ovulation may not occur in every cycle (McKinlay et al. 1992). The levels of the hormone oestrogen fall and when levels fall too low to stimulate endometrial growth, bleeding stops altogether and the menopause occurs (Abernethy 2003). This erratic production and eventual decline in hormone levels in the blood are responsible for many of the symptoms of the menopause.

Common symptoms arising in Menopause

It is important to note that women with learning disabilities experience the same range of symptoms as other women during and after menopause (Martin et al. 2001). In this article the short-term, intermediate, and long-term symptoms of this condition are highlighted, with suggestions as to how carers might respond to them. In many cases hormone replacement therapy (HRT) may help resolve the symptoms of menopause; this is discussed further below. In all cases a healthy lifestyle should be encouraged, a good varied diet and an appropriate level of exercise, to promote the best possible general health.

Typical Menopause Symptoms (McKinlay et al. 1992).
Short term symptoms:
Hot flushes, night sweats, psychological symptoms e.g. depression, anxiety and panic attacks.
Intermediate term symptoms:
Panic attacks, bladder symptoms e.g. incontinence.
Long term symptoms:
Osteoporosis, and cardiovascular disease.
Hot Flushes / Night Sweats

These are the most common symptoms of the menopause. When oestrogen production drops abruptly during the peri-menopause, there is a change in the brain’s chemistry, which affects the temperature control centre in the hypothalamus. This causes a rush of heat over the face, neck and arms, followed by a profusion of sweating as the body attempts to regulate its’ temperature. When these flushes occur at night they are known as ‘night sweats’ and can be very distressing as they can cause sleep disturbance.

How the carer can respond:
  • The dietician may be consulted regarding the introduction of some foods; those high in magnesium, calcium, vitamin B6 (cereals), Vitamin E (nuts, almonds and avocado) and phyto-oestrogen (a chemical compound that occurs naturally in plants and has estrogenic properties) or restriction of some foods; caffeine, tea, red wine, refined sugar and spicy foods.
  • Assist the client in choosing suitable clothing—e.g. wearing layers of clothes, especially cotton and natural materials.
  • The use of bed linens which are made from natural fibres should be promoted. Plastic mattress covers and incontinence sheets should be avoided where possible.
Psychological symptoms

Milner (1997) describes psychological symptoms such as depression, anxiety, panic attacks and changes in libido, which may accompany the other symptoms of the menopause. These may not be directly attributable to the decrease in levels of oestrogen, but may be as a result of all of the changes that occur during this transition.


Depression during the menopause is most likely to occur during the peri-menopause period but it can last for weeks, months or years. At this time women may experience pain, disrupted sleep, loss of appetite, tiredness and sadness.

How the carer can respond:
  • Be aware of any changes in the client’s mood, for example she may experience feelings of sadness and worthlessness
  • Observe the client’s behaviour, she may become less motivated or change her routine.
  • Observe her physical state—she may have physical pain, for example she may complain of headaches.
  • The client should be encouraged to exercise as an increase in her level of activity will increase the rate of endorphins (the body’s natural mood enhancers) produced in the brain. Regular exercise will also help maintain good circulation, mobility, bone density and wellbeing.
  • Encourage the client to talk about her problems, encourage her to express her emotions.
  • Antidepressants may be advised by the GP in some cases.
Anxiety/panic attacks

Women may experience episodes of anxiety at this time. This may take the form of generalised anxiety or in more severe cases may manifest as a panic attack; these are periods of acute and unremitting terror that grip the individual for periods of time, lasting from a few seconds to a few hours. The lifetime prevalence of a panic attack is estimated to be 4% (Katerndahl and Realini 1993). Signs of generalised anxiety may include:

  • Exaggerated worry and tension
  • Expecting the worst
  • An inability to relax
  • Insomnia
  • Physical symptoms: fatigue, trembling, muscle tension, headaches, irritability or hot flushes.

Symptoms of a panic attack may include:

  • Shortness of breath
  • Clammy skin or sweating
  • Irregular heartbeats
  • Dizziness
  • Faintness
  • Feeling of un-reality.
How the carer can respond
  • Reassure the client
  • Carers should assume a calm disposition
  • Practice deep breathing exercises with the client (Eason Rowe 2006)
  • Clients can be encouraged to talk about how they feel
  • Carers should encourage clients to live an active and meaningful life, in order to develop a positive image of themselves, maintain or develop their self-esteem and promote physical wellbeing.
Incontinence in women experiencing menopause

Urinary incontinence refers to the involuntary loss of urine. It is not uncommon in adults, particularly women and the incidence increases with age (Milsom et al. 2001). During menopause, the decline in levels of oestrogen can cause changes in the lining of the vagina and bladder, which are heavily dependent on oestrogen to maintain its elasticity and health. Also the muscles of the pelvic floor may weaken due to these hormonal changes.

How the carer can respond
  • It may be advisable for some women to attend their GP for advice with regard to incontinence (Brooker and Nicol 2003).
  • Where incontinence remains an issue it is important that appropriate incontinence wear is provided for the client.
  • At night, protect the mattress with a waterproof cover- However make sure that this does not come in contact with the person’s skin, as it may cause irritation and soreness.
  • Incontinence itself can also lead to skin irritation and soreness.
  • It is important that the person washes carefully in warm soapy water and dries themselves thoroughly prior to putting on fresh clothes.
  • Pelvic floor exercises can also help to strengthen the pelvic floor muscles and may be appropriate for the client. (The Continence Foundation 2001)
Cardio-vascular disease

Cardiovascular disease—hardening of the arteries, high blood pressure, heart attacks, heart failure, and stroke (Preston 2006)— is thought to be linked to the menopause. For reasons not fully understood, oestrogen helps protect women against cardio.vascular disease during childbearing years. After menopause the incidence of cardio-vascular disease increases (Cornforth 2006). Cardiovascular disease often has no symptoms, but there are some signs to watch for including:

  • Chest or arm pain/discomfort.
  • A warning sign of a heart attack
  • Shortness of breath, dizziness, nausea, abnormal heartbeats and feeling tired.
  • How the carer can respond Clients should be encouraged….
  • Not to smoke
  • To exercise regularly
  • To eat a healthy diet eg: fruit, vegetables, low fat dairy products and fish.
  • To maintain a healthy weight.
  • To have regular health screenings, eg: blood pressure, cholesterol levels etc.

Osteoporosis is ‘a progressive systemic skeletal disease characterised by low bone mass and structural deterioration of bone tissue, with a consequent increase in bone fragility and susceptibility to fracture’ (World Health Organization 1994). Osteoporosis may not have any symptoms until a fracture occurs.

How the carer can respond

The client’s diet may benefit from review by a dietician, who may suggest an increased intake of calcium, protein and vitamin D

  • Some medications are available for osteoporosis. Clients should attend their GP for advice with regard to this.
  • Gentle weight bearing exercises and an increase in general activity, all within the client’s capabilities, may be advisable also.
  • Clients should be advised about reducing alcohol intake and smoking cessation, as both in excess are associated with osteoporosis.
  • Advice aimed at preventing accidents and falls will be of benefit also. (Brooker and Nicol 2003).
Other issues of which carers need to be aware
Hormone Replacement Therapy

Hormone replacement therapy (HRT) is ‘the giving of prepared hormones as a substitute for those hormones that the body can no longer produce or that have been lost as a result of surgery.’ (Weller 2005). Walsh et al. (2001, p.204) note that ‘… the frequency of oestrogen or hormone replacement therapy is much lower in women with intellectual disabilities than in women in the general population.’ This situation warrants further investigation. HRT is prescribed in many forms, depending on which suits the woman best. The options are; in tablet form, as a skin patch, pessary (a vaginal suppository) or as implants.

How the carer can respond
  • An individual assessment of the degree of distress caused by the symptoms should take place. This should be weighed against the side effects and risks of therapy.
  • The client should be facilitated to make an informed decision on which treatment to take (Whitehead and Godfree 1992). A number of consultations may be required in order for her to understand fully about HRT. Whitehead and Godfree (1992) suggest giving the person additional materials such as books or leaflets, DVDs and CDs and perhaps organising a counselling session with an experienced practice nurse.
  • A ‘trial of therapy’ for three months should be offered. During these three months carers should assess the effects of HRT on the client and should ensure that these are reported to the GP.
  • Carers can give information, reassurance and support to clients and help explore concerns and worries.
  • The need for breast examination should be explained to the client and, where appropriate, the technique for self-examination can be taught (Alexander et al. 2000).
Women’s knowledge and understanding of the menopause

Traditionally little attention has been paid to the ways in which women with ID perceive the menopause, reproductive health care needs and age related concerns. McCarthy (2002) acknowledges that some women with intellectual disability may have only a limited knowledge of the menopause. The result of this is that older women with ID have not been adequately prepared for, or supported through what, for most women, is a significant ‘change in life’.

How the carer can respond
  • Recognise the importance of women with intellectual disability understanding the menopause.
  • Training and education concerning the menopause will help client and their carers. Videos and adapted information sheets are available (McCarthy and Millard 2003b).
  • Older female staff with experience of the menopause could share their experiences and feelings with women with ID to aid with understanding and acceptance of this stage of their lives.
  • The changes that happen to a woman during the menopause are difficult for some women to acknowledge (e.g. weight gain, growth of facial hair, or thinning or loss of hair from the head) and therefore, sensitivity on part of the carer is required.

In conclusion, it is important that carers of women with intellectual disability are aware of the signs and symptoms of menopause. Carers should also have a working knowledge of the range of treatments that are available to relieve the more distressing symptoms of this natural event. In this way women with intellectual disability can be appropriately supported through this natural transition in their lives.


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