For caregivers: Accepting the diagnosis, understanding dementia

When someone in our family is diagnosed with dementia, it is a difficult diagnosis to understand and adjust to, partly because we do not know what dementia is, and partly because a lot of what we hear when the diagnosis is given is so clinical and remote that we do not understand how it will affect the persons with dementia or people around them.

Awareness about dementia is very low in India, and the problem is not recognized as a medical problem in society. There is also a lot of misinformation about dementia and we often see contradictory/ confusing reports in newspapers. Some think that dementia is just a fancy name given to common and normal ageing problems. Some think it is a type of “faster” old age, or that only inactive or dull people get dementia. Some persons believe there is a cure. Many people believe that Indians cannot get dementia (because they think this is a Western disease). All this is wrong; dementia is a group of symptoms caused by medical problems, and not a normal part of ageing. Most types of dementia are irreversible and there is no cure. The Dementia India Report 2010 estimates the number of persons with dementia in Indian in 2010 as 37 lakhs (one in every 16 families with an elder has a person with dementia).

Poor knowledge about dementia delays the recognition of the symptoms and seeking of diagnosis. It also delays acceptance of the situation after diagnosis, and hence delays doing things that will actually help. Knowing the types of symptoms to be alert about is necessary so that appropriate medical help is taken to get a diagnosis. For example, many people assume that dementia is the same as memory loss, but in fact, in some types of dementia, the prominent symptom could be changed behavior (and the memory may be fine). Or people assume that only persons well in their sixties or seventies or older can get dementia, but dementia also happens to younger persons, such as persons in their forties and fifties. Knowing enough about dementia enables people to remain alert about the possibility of dementia. They then consult specialists early to get a proper evaluation. An early diagnosis can help both the person with dementia and the family caregivers a lot. Read this article: Dementia: Advantages of Seeking an Early Diagnosis.

If you have to live with or care for someone with dementia, understanding some basics about dementia are a must; this knowledge forms the base of understanding what to expect and what not to expect. Only then can realistic steps be taken for providing appropriate care. The About Dementia section of theDementia Care Notes website provides information on dementia basics that caregivers may need.

Knowing that dementia symptoms are caused by medical problems is not enough. Knowing the symptoms is not enough. When we hear doctors talk of “memory loss” or “poor short term memory” or “patient will need more help”, we do not fully register what this will mean to us as family members, as caregivers. In the initial stages, the persons with dementia seem so normal and so capable in social settings that we are not able to remember or believe that they could be facing problems and working very hard to overcome or hide them.

A lot of initial caregiving is more challenging because family members assume that most of the person’s behavior is driven by rationality and intention and do not realize that it is actually because of confusion and reduced ability. A good understanding of how dementia affects behaviour is the foundation for families to start looking for ways to change the way they interact with the person. This topic is discussed at length at: How dementia impacts behaviour.

Oh, and all this information on dementia is also available in Hindi at the Hindi version of the Dementia Care Notes website, Dementia Hindi.