India’s cultural context and its impact on care
Sometimes persons who want to help dementia caregivers in India do not have enough exposure to the cultural context of India. Or they may understand the cultural context, but they have not tried to understand how this may be impacting the patient, the process of and acceptance of the diagnosis, and the caregiving that the family is able to provide.
On this page, I am giving my impressions of how the characteristics of the society and setting in India impacts the dementia patient diagnosis and status, as well as caregiver role.
In India, children live with their parents, and their children with them (going two, three, even four generations). While in many countries a son or daughter living with parents past the age of eighteen can cause a few raised eyebrows, and a married son or daughter staying with parents is far from common, here it is assumed that children will stay with their parents if possible. You stay with your parents as a child, as a youngster, as a college student, and after employment, if you are in the same town. You try to be in the same town. After marriage, the son stays with the parents, and the daughter-in-law moves in too, adjusting to the in-laws (food, dress, TV programs, schedule of day, way of talking, etcetera). A daughter, conversely, moves out after marriage to her in-laws place. This is normal. If the employed son is in another city, well, he has to live separately, but he is expected to try and find a job in the same city. Sometimes sons live separately even when in the same city as their parents, but they have to always justify to others why they do so .
As the parents age and retire/ fall ill (say, first heart-attack, first stroke, first stent operation), even if they were living separately, they move in with the children (or the children move in with them). Usually, when there is more than one son, the eldest son is the “privileged” person to get the parents.
Whatever the configuration, whether the parents move in with the child, or the child moves in with the parent, the head of the family is the elder parent, the father (backed up from behind the wings by the mother). The head-of-family decides, rules, sets the parameters for functioning. As age and disability sets in, the children adjust around it, taking over more and more of the work and caregiving, adjusting their careers and free time accordingly. Authority remains with the elders.
(This is not universal, but it is typical enough, and most people base their comments/ judgments assuming this pattern will be followed).
How does this impact caregiving and caregivers, especially if the head of family (HOF) develops dementia?
First and foremost, the HOF is unlikely to accept he/ she has dementia. In India, some amount of senility is expected, and elders are expected to pass on their chores to youngsters as they age. As they do not live independently, minor deterioration is not visible and a visit to a specialist is not even thought of. It would be downright rude to tell an elder, I think you need to go to a memory clinic Awareness of dementia is very poor, and dementia is seen as either a slightly accelerated aging or (at the other extreme) mental illness (gone mad, paagal). It is socially unacceptable for children to point out memory lapses or mood swings or suggest a trip to a specialist. Diagnosis is therefore unlikely in early stages.
A diagnosis is unlikely to be believed, or its impact understood. Even the immediate family is unlikely to believe the diagnosis or modify expectations or behavior to suit a dementia patient. People (family, friends, colleagues, even children) continue to treat the dementia patient as a person competent to handle decisions, and not understand that the person may be suffering memory lapses and other problems and working around them through delusions, mood swings, cover-ups, frustrations, and accusations. This places a lot of stress on the dementia patient, and on the persons thus accused/ subjected to mood swings. Doctors rarely advise the family on the behavioral impact of dementia; they do not give tips on how to handle the problem with dignity and consideration for all concerned. Support groups are few, and doctors rarely refer patients/ families to them.
The special needs of dementia patients (as the symptoms advance) are not understood or respected widely enough. This includes, sad to say, even health care professionals who are outside dementia-specific circles. In hospitals, junior doctors may believe the dementia patient’s version of the symptoms and dismiss/ reprimand caregivers who know the facts better. Home-nursing help is rarely trained for dementia. As a result, aggressive behavior by a dementia patient is taken as the behavior of a stubborn, uncooperative, inconsiderate person rather than that of a confused, insecure, rudderless person. Relatives, friends, colleagues, all continue to expose the dementia patient to the full range of stimulus, and even extolling the person to show willpower. A patient may complain, I am not given food (when the patient forgets that she has eaten) and people assume the complaint is true.
Caregiving is not recognized as a skill or a vocation/ profession. The family is supposed to take it all in its stride. The person who ends up caregiving keeps dipping more and more into his/ her time to perform required chores, but this is not recognized or appreciated by anyone. It is taken for granted, even when careers are given up to handle the work (usually it is the women who give up their careers for the work). Instead of appreciation, the caregiver is lectured by any and every visitor about how he or she should do more, and is not doing enough. While judgmental people exist everywhere, our society encourages intrusive comments and judgmental/ critical comments, which the receiver is supposed to accept in all humility. Admonishing by totally unconcerned outsiders is common. No one expects the caregiver to want a break or get tired.
Issues related to sharing work or costs of caregiving, or criteria for coma/ death decisions are not discussed. In most families, discussions on such topics are taboo. Children do not know their parents’ stand on do-not-resuscitate or body donation or cremation rites. Parents and children do not openly discuss how the costs of increased caregiving will be shared. Even siblings rarely talk about these things openly, let alone plan for them jointly. It is expected that the main caregiver will do whatever is necessary.
Putting parents in old age homes is not acceptable. It is seen as callousness of the child, or a matter of shame for the adult so shifted. Voluntary moving into old age homes is rare. Children go through great lengths to stay away from this stage, and resort to it only when they reach burnout (and then they are emotionally unable get themselves to visit the put-away parent). Worse, most old age homes do not know how to handle dementia patients.
(All the above are generalizations, of course, but indicative of typical. There are always exceptions, but this is how it usually pans out.)
While this setup does have elders living in and cared for by their families far into their aging and dementia helplessness, there is also a great price paid.
- The dementia patient is forced to/ expected to behave like any other old person, and this stresses the patient.
- The caregiver, burdened by the stress of caregiving plus the admonishing/ critical comments, tires, and this shows in the quality of caregiving (the emotional component). No respite is available to caregivers; their careers, vacations, hobbies, sleep, health, all go for a toss.
- Burnout, when it happens, results in resorting to an old-age home with a sense of abandonment in the patient/ breakdown in the caregiver, and “shame” for all concerned
- Siblings fall out often on unspoken issues regarding caregiving
Here are some action points I can suggest to make caregiving for dementia patients smooth, considerate, and dignified for all concerned.
- Increase awareness on dementia in the general public, and in doctors
- Have easy-to-understand material (pamphlets, audio clips, movies) that can be used to understand how dementia impacts the patient and the caregiver
- Have more visibility for caregiving aspects so that people understand the complexity and stress of this role
- Have specialized training for nurses
- Have more visibility for support services, groups, etc.
- Have more counseling available for caregivers
Caregivers, especially, can do the following
- Use books and available material to understand what the patient is going through, the limitations of the patient, and tools to handle frustration
- Discuss issues openly with siblings, relatives, friends and colleagues using available references to reinforce that this is a disease, not just aging, and that it needs to be treated differently
- Discuss openly issues with other concerned people regarding sharing of costs and work.
- Use available support groups, counselors, and resources to take advice whenever possible.
- Try to get respite
Most of this is not easy, because our society does not allow open discussion on what some people may see as disrespect (how dare you say your father is lying) or laziness (why do you want a holiday? It is your duty/ privilege to look after your mother). But we have to make a start.
(This page was published as a blog entry before it was moved here. To see the comments of readers on the blog entry, you can click here)
Pages in this section:
- Understand dementia and care in the Indian context
- Action Areas to Contribute to, and Possible Approaches
- Community-level work: A Dementia-Friendly India
- Focus: Improve Dementia Awareness
- Focus: Create Dementia Services and Products, Facilitate Support Forums
- Project ideas for students, artists, and others