This note provides an introduction to dementia home care in India, a country where awareness is low, where dementia is often confused with old age, where support systems are pathetic and where society expects a lot from caregivers under the umbrella of duty, love, joint family, and culture, but where society at large does not know enough about dementia to effectively support families in such dementia care.
Even surgeons and doctors prefer not to treat their own family members, as professionals acknowledge that it is difficult to remain dispassionate and objective when dealing with persons one is emotionally close to. Family caregivers (uninformed about dementia's impact on behaviour) are often upset or disheartened about accusations flung by deluded patients, or when loved ones lose their memories and fail to recognize the carers.
Children may require support because they are preparing for important exams. They may require attention because they are being influenced by undesirable friends. A family member may fall ill, say, get cancer. Because all these have to be handled along with care of a person with dementia, life is an endless struggle to fit in everything.
Even a day's break is often infeasible. Dementia care is not a short-term adjustment of a few weeks or months--it extends for years.
Every adjustment required for the comfort and care of the patient costs time and money, which means sacrificing something else, like foregoing tuition for a child, or a medical check-up for another family member, or reducing nutritious food. But many caregivers, feeling a sense of shame, do not talk of their financial problems.
For example, relatives and neighbours may call family members cruel if they keep doors locked to prevent wandering. Or they may insist that families show "respect" for the patient by making the patient take major financial and other decisions that patients are no longer capable of making.
Criticism sometimes reaches extremes like accusations of neglect or theft or attempted murder and people even threaten to inform the police. Caregivers have to cope with these in addition to trying to care for the patient.
As caregiving for the patient extends across years, even more than a decade, all these combine to create a continued high-stress situation. Another problem is that caregiving occupies so much time and energy that the death of the loved one leaves an unbearable vacuum and results in a loss of identity.
Caregivers hesitate to mention their fatigue, sense of overwhelm, or financial difficulties in such an environment. On one hand, caregivers spend years of intense sacrifices in the relentless caregiving that a person with dementia requires; this is accompanied with extreme isolation as they spend more and more time providing care and cannot talk about their own burnout without hearing lectures on love and duty. Even for the lucky few who are in supportive environments, advice given by others is not always appropriate because very few people understand what would really help.
For example, a family caregiver who has to leave the patient at a day care and then go for an important and unavoidable meeting is likely to get restless if the patient is just not cooperating to get ready.
The aspect of juggling multiple roles is often missed out by persons who only consider one aspect of the caregiver's life--the role in dementia care--and forget all other things this person is balancing multiple roles and activities all the time. A volunteer can take a day off for a personal emergency; but a family caregiver juggles other emergencies with dementia care. Even if unwell, the family caregiver still has to do what is needed for the patient at home. This is tremendously taxing physically and emotionally.