Unaware and Unprepared

The population of elderly in our country is growing and along with it the problems of an aging population.  While the general awareness about diabetes and heart disease is on the rise, not enough has been done to increase awareness about Alzheimer’s disease and other dementias.  We are both unaware and unprepared for the magnitude of the problem.

‘Dementia’ is one of the major causes of disability in older people.  It is a disorder of the brain that causes progressive and irreversible deterioration in the brain cells.  Affected persons lose their memory, ability to read and write, their ability to speak and even to understand or to make simple decisions.  Alzheimer’s disease is one of the common forms of dementia.  It is a slow disease.  It starts of mildly and ends up causing serious mental problems.   So far, there is no known cure for this disease.   Largely, it affects those over 65 years of age though in around 2% of the cases an earlier start has been observed.   Current estimate is that India has about 3.7 million persons with dementia.  With an aging population and people living longer these numbers will only increase.

Dementia does not affect just the patient but also their families.  As the patient’s brain starts losing its ability to perform various functions, they are gradually unable to care for themselves and it increases the demands on their caregiver.  In the early stages, the patient needs help getting dressed because they forget how to do this.  Gradually, they forget how to bathe, keep clean and this also has to be done for the patient.  In subsequent stages they will need help with the toilet and personal hygiene as they become incontinent.  They will need to be spoon fed as they forget how to eat.   In addition to all this, many patients tend to wander away or do something unsafe. They may lock themselves inside a room and not know how to open the door again.  Most patients also lose their inhibitions and may shed clothes at inappropriate times.  Some may get violent and aggressive while others may get paranoid or hallucinate. 

In India, doctors generally do not prepare the patient’s families for the practical problems they will face in caring for their patient.  This leaves them unaware and unprepared.  Caring for dementia patients can also be very difficult.  Usually it is the patient’s spouse (who is also old) or their children.  Children of such patients are adults with their own families and careers.  Often, such children will have to give up their well paying job to take care of their father or mother.   Such caregivers deal with a lot of emotions from anxiety, denial, depression to fatigue and health problems due to stress and lack of sleep, and experience social withdrawal and even guilt. In some families, giving up paying jobs to be at home to provide care also adds a financial burden.

The problem is compounded due to general lack of awareness about this condition. It is often not recognised in the early stages by family members or it is stigmatised by society as madness. So the patient’s family keeps themselves isolated from friends and neighbours when actually they need all the help they can get.   In the West, there are many facilities for the care of such patients and there are support groups that help caregivers of such patients.  Presently very little is being done in India for a problem affecting a large number of silent sufferers.  

To make a beginning, a new support group for caregivers of dementia patients has been started.   Log on https://sites.google.com/site/caregiversfriendmumbai/  to meet other caregivers of dementia patients.   Join in the discussion forum and talk to others about how they are coping.     In case you are a caregiver for a patient with dementia, please take heart that there are friends you can reach out to. Sharing experiences, information and suggestions goes a long way in reaching out to caregivers in their lonely labour of love.  For more information, write to me at caringmumbai@gmail.com.