Living with dementia in India – A couple’s journey

Mr. Sharma (name changed), a retired Grade A officer with one of the departments of the Government of India, now 78, lives with his wife in the home that they built after his retirement.

Mrs. Sharma has always been a home maker , and feels that she is now taking care of another child at home referring to her husband of 51 years. Mr. Sharma was diagnosed with dementia in late 2016, making Mrs. Sharma his primary care giver.

Proud parents of two very successful sons, Mr. and Mrs. Sharma are one of the many couples experiencing the challenges which dementia has brought into their lives. The first time I met the Sharma family, it was a very sad and emotional state. Shortly after my first meeting with them, Mr. Sharma was clinically diagnosed with dementia but he had probably started developing the symptoms much earlier but the family failed to understand them.

One and a half years after the diagnosis, Mr. and Mrs. Sharma are still learning every day about the disease and its various aspects. Roles are more blurry now in the house. Once the head of the family, Mr. Sharma now needs help with almost all his activities of daily living and routine. Mrs. Sharma has now become the sole caretaker of the house doing most of the work on her own with all the help she is willing to take. The struggle with dementia still continues because of the little awareness about the disease in the society.

Mr. and Mrs. Sharma are not the only couple whose lives have been changed forever due to dementia. Banerjees (name changed) are another couple coping with dementia. Mr. Banerjee, 87, himself a depression patient has been finding it so difficult to manage the changing behavior his wife has been showing in the past few years. Mrs. Banerjee was diagnosed with vascular dementia and had to slowly leave all household chores and home management tasks as her decision making capabilities were gradually declining.

In another case Mr. Verma (name changed) had to leave his job to take care of his wife who is in now in a moderate stage of dementia.

Awareness of dementia is low in India, families accept the disease the way they understand it. For some they feel their elderly is running away from responsibilities and has become lethargic. There is a strong denial, lack of understanding and unwillingness to accept the situation. Others give up their hopes when they learn that there is no cure to the disease and leave it to destiny. Some families may become overprotective of the elderly and may deny them decision making and control their lives completely. The key here is to understand the challenges and decide on how best to take care of the elderly and the situation. What impacts a couple the most is “the change in roles”. The roles that the elderly was always taking care of become difficult for him/her to perform over a period of time. It also leads to changes in the dynamics of the family relationships.

Here is how the family dynamics and roles change for the spouse with primary care giving responsibilities:

1) Acceptance – This is the first step in dealing with the situation, many times the spouse is not able to accept the disease. He/she will be in denial, relate it to old age, loneliness etc. They may try multiple ways of solving the problem by seeking alternative remedies, treatments and even religious rituals. Therefore it is important for the spouse to realize that dementia is a neuro-degenerative disease and it will require continuous long term care and life style changes for the family.

2) Self-care and health – The primary caregiver and in this case the elderly spouse will foremost need to take care of his/ her health. This is very important as care giver stress can further impact health of the spouse.

3) Finance management – This becomes especially challenging if the husband was the primary person in charge of finances. Many a times the wife has to struggle to understand the details and banking paperwork and other aspects. It can become quite stressful to manage such a responsibility if the wife has never been involved in such decisions earlier.

4) Loss of independence – When one of the spouses becomes the primary caregiver, he/she ends up losing their independence as they are now additionally burdened with care giving responsibilities.

5) Legal paperwork – The caregiver spouse has to understand all the legal paperwork related to taxes, property, banks, investments and pension etc. to be able to manage the transactions on their own.

6) Caregiver stress – The care giving spouse must do his/her best to keep the social life active and have avenues to de-stress and relax. When the couple lives alone this can cause tremendous fatigue and depression in the care giving spouse.

7) Lack of support  – When a couple is living alone it is important for them to ensure that they have adequate help and support at hand to meet the additional care giving responsibilities. Many times the spouse in charge refuses to take help or tries to do it all alone. This can severely impact the health of both the patient and care giving spouse.

8) Medications and hospitals visits – Taking care of doctor visits, medication management become an additional chore which has to be managed by the spouse.

9) Changes in relationships – When one’s spouse is diagnosed with dementia the couple’s relationship changes completely from a relationship of inter dependence to one of dependence. The care giving spouse slowly loses his/her life companion and begins to miss out on the activities they used to do as a couple.

These are just some of the areas that are affected if one of the spouses is diagnosed with dementia. We will be discussing each one of these aspects in more detail in our subsequent blogs.

It is very difficult when a spouses gets a disease like dementia. But if one can make the best of the situation and enjoy the moments of joy and happiness amidst all the confusion and forgetfulness, it can reduce some of the stress.

Always remember

  • There is no right or wrong way of handling the disease; there are “your ways”.
  • Love, care, support, understanding and encouragement are essence of any care giving.
  • Self-care should not be lost when one is taking care of anyone else as well.