For caregivers: What dementia caregiving involves in real life

Living with, and supporting a person suffering from dementia often affects just about every aspect of the caregivers. In the beginning it seems like living with a slightly more forgetful elder, and just a somewhat different case of normal living with the elders, something quite common in India. But actually, the caregiving keeps getting more intense over time and extends for many years.

Fact is: Dementia caregiving is different from living with normal elders, and family members have to understand and plan for it rather than assume it will happen automatically. The memory loss that happens in dementia is different from what normal elders experience, although this is not obvious in the beginning. And memory loss is only part of the problems faced by dementia persons, there are many others which could affect the family much more. For example, personality changes could make the person act in aggressive or even obscene ways. Poor orientation could make a person wander. Reduced decision making ability could make the person sell off property at ridiculous prices, donate off all the money to dubious charities, and so on. Persons with dementia may get aggressive or withdraw into a shell. And families, to cope with these, need to really change the way they interact with the person. They also need to get ready for the dependence which will keep increasing.

A few small examples to illustrate why instinct and normal behavior may not be suitable. We in India are taught to defer to elders and let them make major decisions, but given that dementia persons are not in a position to properly evaluate and decide, we may end up leaving a property sale decision to someone who gets cheated easily by outsiders. Even in simple, normal, day-to-day interactions, we may forget that persons with dementia have problems understanding things and so we may end up giving detailed and complex explanations to elders which only confuse them and agitate them, instead of speaking in simple ways that they can understand. Or when someone with dementia misremembers something and accuses some close family member of cheating (like accusing someone of stealing a gold necklace that was sold long ago), we may believe the accusation and this could cause rifts and bitterness in families.

To live with someone with dementia is to be conscious of the person’s altered capabilities and reality all the time, and to stay tuned to what the person can and cannot do in every interaction with the person. To care for someone with dementia means to be ready for the progression of the problems, and to be able to keep adjusting one’s life to do all that is needed, depending on the stage of the person’s dementia. All this is not instinctive, especially as our awareness is poor and so is the awareness of people around us (their advice is often unsuitable).

I have consolidated information and tips on caregiving skills and how caregiving affects the family in a complete section at: Caregiving for dementia . This includes discussion of the overall care framework, discussion on the caregiver role and the planning of dementia care for each stage, and also discussions of practical changes to make in the home, in the way we talk and help persons with dementia, etc. how to use services and support, what sort of problems happen in families and how to avoid them, caregiver emotions and stress, long distance care, and several such topics are discussed in detail.

For caregivers looking for immediate relief, a good starting point is the Dementia Caregiving Essential Toolkit, which include skills on how to communicate with someone who has dementia, how to help them with daily activities (also called “activities of daily living” or ADL) , how to handle challenging dementia behavior, and how to support persons in late-stage dementia.

One thing most caregivers do not realize is that this dementia care can extend over several years, and the work required grows and grows. It is impossible for one person to handle this alone 24 x7 all days of a year, several years. Support is needed. This is in terms of services like trained attendants, and there are other support services, but it is equally important to make sure that other members of the family are involved in and share the care work and responsibilities, and that we also take help of others like family, friends, colleagues, etc. Caregivers need to take care of themselves to avoid stress and burnout.

If you are a caregiver, and are looking for resources and organizations that can help, do check out the Resources page and the Our dementia awareness and caregiver training downloads pages of the Dementia Care Notes website. For people in India this can be particularly useful as these pages list resources in various Indian cities and also resources in Indian languages.

I have also created English and Hindi videos related to dementia care: My personal caregiving experiences and Videos with suggestions/ tips for dementia caregivers.

There are plenty of books and websites and videos with information on dementia care, but most of this material is written for a different social context and assuming a different level of awareness and support. While reading these, it ,may be helpful to check out this page so as to make the best use of the material in the Indian social context: Applying available dementia/ caregiving material to the Indian context

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

As I am concerned about dementia home care, I continue to work to support family caregivers of persons with dementia in India; my explanation about my work in this area is here: The dementia care related work I do.