Invisibility of caregivers leads to their isolation: a development consultant shares her key perceptions

Shikha Aleya is a writer, researcher and development consultant, and is involved in too many projects at any given time, including pet-sitting. Along with friends and colleagues, she is trying to create a community forum called Caregivers Link, to connect caregivers, resource people, and organizations together. As part of her work related to this, she has been collecting data to understand caregiver concerns and perceptions and needs better. [note]

Based on the data you have gathered so far, can you tell us how the caregiver role is perceived in India?

…informal family caregiving is not seen as a distinct role.

From the responses received and after talking to many caregivers, one key perception that emerges is that informal family caregiving is not seen as a distinct role.

Most caregivers are family members (children, parents, spouse, siblings) of the care receiver, and because they are related, their ‘caregiving’ is commonly perceived to be an extension of their role in these relationships. It is almost like saying, “You don’t need help to be somebody’s wife, mother, father or child, so why do you need help being a caregiver in those relationships?”

Most caregivers appear to agree that providing care is part of the relationship, but the problem is that the support they need to provide care is often missing. Even under normal circumstances (where no care is involved), everyone needs support in these roles. The situation is much more difficult when someone also needs to provide care; such a caregiver needs much more support.

This invisibility of the caregiver leads to caregiver isolation and is one of the areas that Caregivers Link plans to address.

Could you describe the common areas of concern caregivers have?

Top of the list is the need for trained attendants for home care.

Top of the list is the need for trained attendants for home care.

Another major area is the need for ‘respite’ for the caregiver. The caregiver can take time out only if there are alternative support systems (like respite care institutions) that will take care of the care receiver, or there is a well-managed family shift support system to take over the care for some time.

Quite often, the care receivers do not adjust well to outsiders (hired help or volunteers) and want only immediate and close family members to care for them.

Almost every caregiver I have spoken to has talked about the difficulty of dealing with the personal attitudes, moods, and feelings of the person being looked after. This care-receiver may be in a physically poor condition, and may also be showing personality-related behaviors that are worrying. Quite often, the care receivers do not adjust well to outsiders (hired help or volunteers) and want only immediate and close family members to care for them. The interaction between the patients and outsiders also fails if these outside helpers (hired or volunteers) lack the training and sensitivity to treat the patient as a person; sometimes these outsiders treat the patients merely as an ‘object of care’ or a ‘project.’

Another key problem most people face is lack of financial support. Two kinds of financial problems emerge:

  • the actual direct expenses incurred for expense heads such as medication, professional fees, therapies and other such related items
  • the earnings lost because the caregiver may have to give up a regular job or has to switch to a lower amount of work or stop working entirely to be able to look after the person being cared for.

Caregiver responses also show that caregivers feel that the data and support they need for their role is mostly non-existent or very difficult to locate.

There are no easy support solutions for all these problems, but we at Caregivers Link believe that discussing these openly is a start.

How do caregiver concerns and issues differ depending on the patient’s illness and other caregiving conditions?

One aspect is that the difficulty of caregiving differs in intensity across caregiving scenarios. Some circumstances of caregiving are better supported by information and resources than other circumstances of caregiving–for example, more support is available for looking after a patient with a common form of cancer than is available for a rarer form of cancer.

While medical costs are an issue for most caregiving situations, there is an additional problem regarding medicine availability for certain kinds of medication, especially in severe and terminal illnesses. The cost of medicines and medical processes is sometimes extremely high for some medical problems.

Another area of differences is because there is poorer awareness and acceptance in society about some illnesses and the related caregiver challenges. Caregivers are therefore less open in such circumstances. For example, secrecy is commonly seen in caregivers dealing with circumstances such as aging and dementia, or when looking after family members with mental health problems. Mental illness is an area that causes uncomfortable feelings and reactions such as shame and embarrassment, making caregiving much more difficult to deal with, and also making support harder to access.

How openly do caregivers share their problems with others around them? How forthcoming are they when interacting with persons working as volunteers or professionals who are development consultants?

Some caregivers have told me they’re not interested in speaking to the friends they had before the caregiver role took over their lives, but they are willing to speak to someone who is focusing on the problems of caregiving across circumstances.

Some caregivers have told me they’re not interested in speaking to the friends they had before the caregiver role took over their lives, but they are willing to speak to someone who is focusing on the problems of caregiving across circumstances. This gives caregivers a chance to speak about their own unique experiences to someone who is not listening to them or judging them as friend or family member, but as an independent third party creating possible and professional intervention.

When talking to persons who understand caregiving (volunteers and professionals in this area), caregivers are very forthcoming about their situation as long as the interactions are one-on-one, over email, phone, or face-to-face.

…some societal taboos also make secrecy and anonymity necessary under certain situations, such as caregiving for people with ageing problems, dementia, and mental health problems

As I mentioned earlier, some societal taboos also make secrecy and anonymity necessary under certain situations, such as caregiving for people with ageing problems, dementia, and mental health problems. Fear of job loss, of future (marriage chances etc.) of children specially girls, of loss of face and esteem in front of relatives and society are some common issues.

Some caregivers do not live in the same city (or even country) as the patient. They have to coordinate care from a different location. Could you share some salient concerns/ challenges such caregivers have voiced?

I’d like to address two aspects of this question–one is the issues raised by remote control caregivers, and the other is my perception of their situation based on personal conversations.

Issues revolve around the difficulty of remote-controlling resources where the quality of the resource is poor and so is the availability. Examples are: home-care attendants for patients, and services to help the caregiver with day-to-day activities, such as grocery shopping or bill paying.

Remote caregivers are also very concerned about whether the local caregiver (who may or may not be living with the patient) will be able to access emergency response systems when needed. By emergency response systems I don’t just mean medical, but also security related, which is a big issue with elder care. Crimes against senior citizens are a serious concern and while police have a senior citizens program, there is a sense that this may lack a uniform standard of implementation or response systems. This brings up a key gap area, in the communication and engagement protocols between society and public institutions (in this case, police.)

…the “top of the list” feeling of these remote caregivers is frustration; distance makes it hard for them to interact with the local family members who are handling caregiving. There are spoken and unspoken tensions around sharing responsibilities, and over disagreements.

My perception is that the “top of the list” feeling of these remote caregivers is frustration; distance makes it hard for them to interact with the local family members who are handling caregiving. There are spoken and unspoken tensions around sharing responsibilities, and over disagreements. The situation is complicated because the negotiations are often conducted over the phone.

Another perception I have is that a sense of guilt often adds to the remote caregiver’s frustration (this guilt may or may not be identified as such). While all caregivers have to deal with past and present complex personal feelings they have towards the care-receiver, the remote caregivers have to deal with the additional emotional and functional complexities because of the distance.

Caregivers are often too overwhelmed to realize they need help, or know that help is available. How do you plan to reach out to and help such caregivers?

If caregivers are an invisible community, sometimes even invisible to themselves, then this invisibility is the first thing that has to change.

We are beginning by having as many conversations as possible with as many people as possible, whether or not they are caregivers. If caregivers are an invisible community, sometimes even invisible to themselves, then this invisibility is the first thing that has to change.

I am uncomfortable using a phrase like ‘helping caregivers.’ What we at Caregivers Link are setting out to do is just what the name says – ‘link’ caregivers, communities and resources to each other with the aim of identifying activity areas, solution options, facilitating the creation of support systems driven by caregivers and all those connected to the world of caregiving.

Are there any studies or estimates on the overall caregiver costs/ burden in India?

None that I have come across – but I think that the recent ARDSI ‘Dementia India Report 2010’ has something about the cost burden of caregiving for dementia patients.

Would you like to share some of your plans for Caregivers Link? How can caregivers reach you?

Please email caregiverslink@gmail.com. Drop by the website at www.caregiverslinkonline.com and the Facebook group at http://www.facebook.com/home.php?#!/group.php?gid=132685636772909

We are engaged in two ongoing exercises right now; we invite everyone to join in at any point.

One is a resource mapping exercise – we are collecting information about all kinds of resources across the circumstances of caregiving that are available in India and posting these in the resource section of the site, accessible to all.

The other is an information collection drive. Write in or post on the website, tell us what you think needs to be done to grow the link. Please also participate in the ongoing survey at http://caregiverslinkonline.com/home/survey-form-for-caregivers/

Is there any message you have for caregivers of dementia patients?

Actually, I’m not sure caregivers want messages. The caregivers I’ve known are dealing with so many things, they have no time to breathe.

I’d like to say that I hope that all the many people we’ve met and who have spoken to us about caregiving find themselves able to share their experiences and knowledge through Caregivers Link – as well as in the future be able to use the network and resources for themselves.

Thank you, Shikha, and let’s hope your initiative grows into a sturdy community. I’m sure all caregivers will agree that we need a caregiver community.

You can learn more about Caregivers Link, the community that Shikha and her colleagues are setting up, at this link: www.caregiverslinkonline.com You can also write directly to Shikha at shikha.aleya@gmail.com

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Note: This is an interview of an expert/ volunteer. The views expressed and the suggestions given are those of the interviewed person, and not a recommendation being made by Dementia Care Notes. Suitability and applicability of the suggestions remain the responsibility of the reader. For professional advice suitable for your situation, please consult an appropriate professional.

One thought on “Invisibility of caregivers leads to their isolation: a development consultant shares her key perceptions”

  1. In India , such an initiative is the need of the hour . Family support systems are disintegrating , both in the urban and the rural scenario . Families are shrinking , as members move away from each other , due to jobs and other exigencies . Where the state has failed to provide adequate support , individuals and communities must step in . Researching various aspects of the problem as it exists today , will certainly help create the support that is lacking . Caregivers need care too ! The focus on their needs and requirements is a welcome first step in this direction .
    I wish all who are thinking about this and trying to create an active community , all the best !
    Runa Sood

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