Alzheimer's terrible cost for women caregivers

*Seven out of 10 dementia/Alzheimer patients are women, at the Sevac Mental Health and Human Resource Centre in Kolkata, where patients with dementia/Alzheimer, who have been rejected by their families are housed and cared for. One of the few such institutions in India, the centre’s 10-bed wing for elder care has to accommodate around 14 patients of whom 77 per cent are women.

*Every few months the telephone rings frantically at the Delhi Jeevan Dhara Social Centre, a home for destitute older women. The caller usually is a policeman or a neighbour requesting the centre to pick up and house a woman stranded on the roadside or abandoned by her family.

Alzheimer’s Disease (AD), the degenerative brain disorder and the commonest form of dementia, often sees its patients doubly traumatised. Along with disturbance in memory, thinking, comprehension, concentration, and in orientation to physical surroundings caused by the disease, they end up being abandoned by their loved ones.

Putting themselves last

Studies focusing on measuring the burden among caregivers of AD patients reveals increase in stress levels, resulting in greater risk of poorer health habits such as poorer sleep, poorer nutrition, less exercise and greater propensity for drug abuse, such as sleeping pills and mood enhancers. These can have adverse consequences for the immune and endocrinal functions of these individuals. As Chandigarh-based Surinder (66), daughter of Harcharan Kaur, who passed away this summer, puts it, “My mother was a victim of AD and I a victim of its repercussions.”

A study I conducted on the experiences of caregivers and volunteers registered with Alzheimer’s and Related Disorders Society of India (ARDSI) established the higher percentage of females among them. It also revealed how women, confronted by the adversity of AD affecting a family member, were impacted in more drastic ways than men. The interactive survey was conducted in January 2009 on caregivers’ experiences as reported by the volunteers and staff working with ARDSI chapters in the last three years in cities such as Bangalore, Chennai, Cochin, Delhi, Goa, Hyderabad, Kolkata, Kottayam, Mumbai and Trivandrum.

On call 24/7

For one thing, a woman caretaker tends to become substantially involved with the patient, providing personal and physical care and other types of assistance in the household for long hours — at the expense of her own interests and needs. Take the case of Goa-based Michelle D’souza (name changed). When her husband was diagnosed with AD, Michelle gave up her job as the headmistress of the school where she was working to become a full time caregiver. Not only has she sacrificed her career — she had just eight years of service left and a chance to become the principal — she has even stopped going out. The only social interaction she has is her visit to the caregiver counsellor at the ARDSI chapter office where she mostly seeks guidance on how better to care for her husband. Issues pertaining to her well-being are never discussed, as “there is no time and energy for that”. To relieve her stress, a caregiver may take help of informal helpers. But they provide assistance only under supervision and for relatively fewer hours.

Significantly, the availability of help to female caregivers, as a stress-reducing mechanism in terms of sharing of workload, is limited. As seen in many families affected by AD across socio-economic groups, a daughter and daughter-in-law assisting a father in caring for his demented wife is common, but a son supporting his mother and providing her relief in the care of a demented father is rare. And if at all, the involvement is seldom as intense and substantial.

So, if it’s common to see the son of an AD-suffering matriarch enjoying his  drink at the club every evening; it is nothing out of the ordinary to see his wife having to forgo a television serial so as she has to keep a constant watch on her mother-in-law.   

Driven to depression

Unfortunately, the chances of caregivers lapsing into depressive illness by being overwhelmed by the misery of loss and chronic stress, which depletes energy and prevents opportunities for relaxation, are seen to be more common among women than men. This is because male members in the family get relief from the constant gloom at home by going to work, and the chances of them giving up their career are very slim. Most women, on the other hand, are totally perplexed with the situation, which causes irritation, agitation and depression.

My research on female adult caregivers of older parents or siblings shows that it is not unusual for them to have forsaken a career or even marriage. They risk facing a lifetime of domestic nursing followed by a lonely and impoverished old age. And all this with no accounted measure of personal sacrifice.

Some solutions

In identifying the gendered stresses of caregivers, attention also needs to be given to anxieties about the future, stemming from the anticipated deterioration in the health or mobility of the patient, the lack of services and the desire to avoid being obliged to relatives or friends or neighbours.

Some longitudinal studies conducted abroad on caregivers indicate the prevalence of socio-psychological ills, long after the caregiving ends. Reducing the burden of care may mean developing appropriate, relevant and useful services that maintain family and personal relationships and are home-centric and sensitive to the changing needs of the male and female caregivers.

An important step would be gearing up on services of counselling and respite care, that are now becoming available in India, too, through local and national support and advocacy groups of the different chapters of ARDSI and other NGOs like Development, Welfare and Research Foundation and Dignity Dialogue. By moving AD from the invisible to visible status — it is important that families acknowledge the disease — and through an engendered understanding of the situation, the lives of hundreds of thousands of faceless family carers can be transformed immeasurably.