Why Dementia is a very serious problem for patients and families in India?

Dementia is a debilitating and progressive illness which affects elderly persons. There is no cure for Dementia, however, they are ways to manage it. It requires a multi-disciplinary approach.

Dementia affect 5% of people over the age of 65. There are several causes for Dementia, but most common are Alzheimer’s disease, Vascular disease and Lewy Body pathology.

What happens in the UK?

Compared to India, there is a lot of awareness in the United Kingdom about Dementia. The services are organized by the government and the voluntary sector. Alzheimer’s society and Oxfam offer lot of support for patients with Dementia and their families. The needs by the patient are viewed as biological, psychological and social needs. This model helps immensely. The patients are usually assessed in a memory clinic by an old age psychiatrist. Lot of patients are assessed by professionals at home as well, which helps in understanding the patient’s environment and the impact of illness.

Only those patients who present with complex symptoms and those who have unusual neurological illnesses like Parkinson’s disease, Huntington Disease or Creutzfeldt-Jacob disease etc. end up being seen by neurologists.The reason why Dementia care falls under psychiatry is because vast majority of patients present with behavioural problems along with memory disorder. The diagnosis of Dementia has a huge impact of patients and families psychologically. In addition, neuro-psychological assessments help in differentiating between Alzheimer’s and Vascular types in the early phase of illness and in identifying certain types of dementia like Frontal lobe Dementia.

Patients with dementia gradually lose their abilities and present with functional impairments. Forgetting becomes very prominent.Affected patients forget appointments, misplace money, glasses and walking stick etc. There is repetition in speech. They keep repeating the same question although you answered them because they can’t remember the answer. Their ability to count will be lost. They find it difficult to find right words to explain and gradually language abilities are lost. Writing will also be affected, for example, they lose ability to write checks. They find it hard to understand other people’s conversations. People lose abilities like cooking, bathing / showering, operating gas cooker, washing machine, microwave, shopping and cleaning etc. They forget the sequencing of the tasks in preparation of tea or food etc. They also lose sense of direction and so driving becomes risky. Their personality changes as if a stranger entered in the body. This leads to severe self neglect.

Wandering can occur I.e. Patients may leave the house and go out any time regardless of whether it is day or night and lose their way.They may behave inappropriately with symptoms like aggressive behaviour,day-night sleep reversal, unable to recognize people and items. In severe stage patients lose ability to retain urine and faeces. So they can be singly or doubly incontinent.

Clearly, you can appreciate that the social needs take a priority as the illness progresses. Hence the relevance of social aspects in Dementia care. In the UK, vast majority of elderly people live on their own. It is rare to see (except Asian families) extended families supporting elderly persons.Elderly people themselves prefer their independence. That’s why the social services(Government organized – usually through the local council) offer services like home help for the elderly persons. This is a free service for those people who do not have sufficient money but people need to pay if they have certain amount in their bank account.

Sadly, patients with dementia die within few years after the onset of the illness.

What is happening in India?

In India, there are serious challenges for the patients and families, right from the beginning of the journey. One good thing may be that we still have extended families, although this picture is changing rapidly due to migration of younger generation.

To start with, not many people can recognize it as an illness,due to lack of awareness. Most people don’t know where to go for help. Usually vast majority of patients with dementia end up in neurology clinic. However, my experience in India tells me that even neurologists don’t have expertise to make a specific diagnosis. I have seen lot of neurology prescriptions which cover all types of dementias. This might reflect lack of interest by the doctor, patient and family and also lack of local expertise as well. For example, very few Radiologists in India are aware of specific radiological changes in MRI / CT head. Above all, the fact that there is no cure might contribute to nihilism in pursuing the investigations further. From family point of view, this is a lot of effort and expense. It does not appeal to them in terms of return in the investment made!

Psychological aspects are usually underestimated in India,for whatever reason it may be. The training in psychology is not well developed either. Even if it is available, it is undervalued.

Social needs wise, most elderly people try to cope on their own. There is some support available from housemaids and sometimes from their own family members. There is no help available from the government. This means elderly people and their families need to spend their own money to organize services by themselves. Major issue is the reluctance to spend money for social care. Neither it is organized nor it is standardized for payments. This creates huge inequalities in terms of receiving necessary care.

So what happens to people who have no money, knowledge or family?

So who should lead? Government, private services or families?

There is a thin line between normal ageing and the Dementia

Many families find it difficult to identify the onset of dementia. Most elderly people and their families think that the memory problems are common in old age. However as the Dementia progresses, it becomes clear that the deficits in memory and related behaviour are disproportionate to the advancement of age alone.

CASE VIGNETTE

Guntur is not a small town. You expect to find solutions for problems. However, I will try and demonstrate the difficulties with an example of a recent case seen at Mahatma Gandhi Institute for Comprehensive Mental healthcare, Guntur.

We came across an elderly couple who have their grown up children settled with successful careers in different cities in Telangana. Wife is 72 year old presented with moderate to severe dementia. Husband is trying to cope with wife’s illness and he himself is 76 year old. He doesn’t want to spend much money for healthcare or social care. One of the sons keep calling us to help them by visiting the elderly couple at home. He says he would come on Sunday and requesting us the staff to stay on Sunday so that it is convenient for his job. Where do we get staff payments to organize help for patients like this? Even the children don’t come forward and tell us they will pay for the service,for us to employ someone.

I see lot of conservative attitude with money in our society. I know this anxiety is deeply rooted in lack of social security in our system. People don’t come forward to pay decently for any service they receive unless they are lied to or twisted arm in a devious way. The payment comes with ICU admission or a series of unnecessary investigations. What’s wrong with you people? (this means I am angry and frustrated).

Something has to happen! Either we change our attitude in spending money when it is really necessary or the government needs to do something about it. As a charitable organization, people expect a free service. How can we provide a free service without any funds? This is not an exaggeration,believe me. To survive in India as a service, we need to spin and lie? Obviously,this will perpetuate the financial abuse, lack of trust and confidence in service providers. Is this the right direction for the society? Another challenge is to find the staff. We claim lot of unemployment in India. You will be surprised to know most young unemployed people are living in dreams. I have seen very few people genuinely having an attitude of service and commitment to the job. There is hardly any respect for professions or jobs which involve caring for the needy.