Survey findings

In the initial stage of our work in mid 2010, we began by attempting to understand the caregiver’s situation. We did this by having conversations with a few caregivers – and also by inviting people to participate in an information collection exercise through offline and online surveys. The result is a glimpse into aspects of an almost invisible world which we’d like to share with you. The survey remains open as a platform for caregivers and friends and family of caregivers to continue to share their experiences and add their piece. You can go to it here.

People who must deal with challenges to their health and ability have some support under certain circumstances and the idea that a person who needs care should be supported is accepted. What is less thought about is the idea that an informal Caregiver also needs support. Our focus is on the caregiver. What happens to the caregiver? What kind of support does a caregiver need?

Total Survey Respondents:- 36
Women to Men:- 28:8
(Over 3/4ths of the respondents are women.)

  • 2 out of every 3 respondents have been / are caregivers.
  • More than 2 out of every 3 respondents, which is almost every one, know others who have been / are caregivers.
  • Less than half the respondents knew of even one organisation / individual working with caregivers in India.

A break-up of ‘Care receivers’ as identified by respondents so far looks something like this:-

Father (mentioned 10 times)
Mother (mentioned 9 times)
Mother-in-law (mentioned thrice)
Father-in-law (mentioned twice)
Husband, Son, Brother, Sister, Partner, Ex-spouse (mentioned once each)
(Some caregivers have looked after multiple care receivers, at times simultaneously.)

Many different circumstances exist, within which a parent, child, spouse or partner, sibling or extended family member may need support. Quite often there is a combination of health / ability issues complicating the situation.

The top of the list of circumstances repeatedly mentioned are:-
(The listing of illnesses is as they were referred to by respondents and there is possible overlap in medical terms between some of them.)

Alzheimer’s disease
Parkinson’s disease

(More details here)

Caregivers have identified top of the mind problems they face almost every day. We’ve tried to group these as well into categories and the numbers against them represent how often they were mentioned. There is always a combination of problems.

The top of the list of problems is populated by:-

Frustration with hiring home care attendants
Juggling work and home (care responsibilities)
Lack of information / knowledge of the health/ability issue
Lack of support
Loneliness and isolation (of the caregiver)

(More details here)

Caregivers have come out with a wish-list – of the support they wish they had. We’ve grouped this as well to the best of our ability – again the numbers represent how often they were mentioned.

The top of the caregivers’ wish-list is populated by:-

Patient and/or caregiver counselling
Hiring trained attendants
Support groups & sharing
Information & check lists
Expenses (help with)

(More details here)

Respondents also articulated their own perceptions of the problems (other) caregivers face.

While many caregivers identify similar problems for other caregivers as they do for themselves – one type of problem is identified for others more than it is identified for self – the need for a break / respite for the caregiver. This is right on top of the list of problems caregivers perceive other caregivers face. They just don’t list it for themselves.

This is a loaded finding. It could point to the fact that caregivers are unable to articulate for themselves what they are able to articulate for another caregiver – the need to get a break. This supports the underlying assumption that most caregivers are so busy looking out for those they are responsible for that the one thing they are unable to put down on their own wish-list for themselves is a break. Other aspects involved are complex feelings such as the implications of wishing for respite and the way this may be viewed by family and friends. So it is almost as if – only a caregiver can articulate for another caregiver – this particular problem / need.

The top of the list of ‘perceptions of the problems (other) caregivers face’  is populated by:-

Break / respite (the need for and inability to get)
Frustration with hiring home care attendants
No time for self
Alone isolated and lonely

(More details here)

This is a dipstick attempt at engaging with perceptions and feelings. It is based on two different types of survey forms that were used through the process. The first survey form was an offline document of considerable length and feedback from respondents was that the length was prohibitive. We shortened the survey form and also put it up online. The shorter form dropped some questions and retained key questions from the earlier version. What we are presenting here is based on 13 long survey responses and 23 short online survey responses.

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  1. Shashie Reyna says:

    I took the survey, and I am so happy that you’ve published the main findings. They really are on target. We need to get area-wise caregiver groups going in our cities and we are discussing that on the caregiver link on Facebook.

    Isolation is a real issue as a primary caregiver, one tries to work around it and other things sometimes not so successfully

    1. admin says:

      Thank you Shashie.

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