Introduction: Becoming a well-informed volunteer and selecting where to help

Persons who want to help dementia caregivers come from a variety of backgrounds and have different individual motivations to work in this field. Some have been caregivers, or have had a dementia patient in their family or immediate circle, some have seen patients during the course of some other work, some are concerned about elder care in general, some may be looking at this as part of a job, whatever. The point is, intention and motivation is an excellent starting point, but then there are some aspects to think about:

• What does one need to know about dementia and caregiving to be able to work in this field?
• Which areas do caregivers need help in?

The volunteer, combining this general understanding with his/ her own interests, skills, and situation (funds, time available, and so on), can decide the way forward.

The gap between what is available for supporting dementia caregivers and what is required is so huge that every well-informed volunteer can make a positive difference. There are things to do for those who want to start vast projects, and there are things that can be done by persons with limited time and energy; the possibilities are huge. Many areas have been identified in various studies and in reports like the Dementia India Report 2010, and many have been voiced by caregivers themselves.

The only caution volunteers must remember is, having good intentions is not a substitute for knowledge.

On this page, I discuss what I consider as necessary to be a well-informed volunteer, and also share information on which areas have been identified in various forums as needing efforts from volunteers. I would value any suggestions you have; please contact me.

In the rest of the section, I share documents I have created as part of my volunteer work. These include ideas for areas of work, wishlists, and also documents and concept papers that can be used for actually working in some area. Again, I would value any suggestions you have; please contact me.

What does one need to know about dementia and caregiving to be able to work in this field?

A basic requirement for any volunteer who may be interacting with patients or caregivers is understanding what dementia is, its effect on patients, treatments (and their limitations) and the sort of caregiving skills that can help. Often many volunteers may have some idea, but they may not have a practical grounding in these concepts. When they encounter the strange and altered behavior of patients or the overwhelm of caregivers, they are therefore unable to understand the situation and may give advice that is unsuitable. If you are a volunteer, and have not yet read up on dementia and caregiving, please consider that learning more will make you more effective and is a worthwhile use of time. You can attend a few courses, or refer to books and sites. One possible reference is my own site at Dementia Care Notes but if you refer to some other books or sites, do make sure you interpret them as they would apply in the Indian context.

Even volunteers who are designing services or facilities for dementia patients or for providing relief to caregivers need this knowledge to create a well-designed service.

If you are interacting with caregivers, it is necessary to understand the dementia home care context. Many book/ website discussions on dementia care assume a lot of available support, and do not take into account the constraints and realities faced by home caregivers in India. To provide practical and effective counseling, volunteers must understand the situation of Indian home caregivers. For this, one possible starting point is the note at: Explanation of dementia home care in India.

Also, read the interviews of Indian caregivers at: Voices: Interviews with dementia caregivers, volunteers, and experts. These are long interviews, but are like case studies suitable for volunteers serious about helping family caregivers. A volunteer who feels impatient reading these can imagine how much more difficult it would be to listen to caregivers saying all this instead. If understanding complex caregiving situations seems a waste of time to someone, then counseling may not be a suitable area for that person; there are other areas where help is needed, and can be considered.

Most available dementia/ care/ volunteer material is designed for different social/ cultural settings and cannot be applied directly in India. Even volunteers familiar with Indian society and culture may not realize what they must remember while trying to use non-Indian material for India. This discussion may help: Applying available dementia/ caregiving material to the Indian context.

It also helps to talk to other volunteers regarding their experiences, and to attend support group meetings and listen to caregivers. These interactions deepen the understanding of what dementia is, how it impacts families, and what challenges are faced by dementia caregivers in India.

Some volunteers assume they do not need to understand home care problems because they will be setting up a facility, but many of the challenges faced in running a facility are similar to those faced at home, for example when attendants hired to care for patients are unable to handle the work because they do not understand dementia. It is therefore worthwhile to get some understanding of home care anyway. The challenges faced in handling difficult behavior of patients are also similar. Also, understanding home care settings is useful in transitioning patients from home to the facility.

For those planning to set up services and facilities, it would be good to talk to others who have done so, and also to others who had wanted to do so but decided not to, so as to know the ground reality before plunging into something big. Experts can also be consulted.

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Which areas do caregivers need help in?

A broad framework of areas in which dementia care volunteers can contribute can be derived by looking at the Dementia India Report 2010 (some relevant excerpts are given below). The report also gives the estimates of patients in India, how dementia is expected to grow, and other such data, which volunteers who have larger plans may find useful.Work that is going on in India in some fields is also detailed in the report.

As such, though, the situation is so pathetic that there is a lot to be done. Caregivers I have met (and also surveyed) often mention the following areas:

• Availability of trained attendants for dementia home care
• Training programs for family caregivers
• Dementia and caregiver training material in local languages
• Caregiver support groups and forums
• More day care (with conveyance) and respite care facilities
• Much higher levels of dementia awareness in society
• Better and faster diagnosis (many families are unable to get a timely diagnosis even after consulting doctors)
• Medical personnel being trained on dementia and its care (many families face problems when they take the patients to Emergency Rooms, nursing homes and hospitals)
• More facilities for caregivers to be able to work part time and from home
• Financial subsidies and support

This “wishlist” is fairly consistent with the core strategies outlined in the Dementia India Report 2010.

For your reference, here are some excerpts from the Dementia India Report 2010 related to areas where work is needed. (In the quotes from the report, please note that PwD stands for Persons with Dementia)

As per Figure 4.2 of the Dementia India Report 2010, the following are identified as the barriers to Dementia Care in India:

• Stigma
• Lack of awareness: Feeling that nothing can be done
• Low Health seeking behavior for memory problems: Feeling that it is Part of Normal Ageing
• Lack of Policy Initiatives for People with Dementia
• 3.7 million people with dementia and less specialist manpower to manage them
• Lack of training and support. Services need scaling up
• Poor awareness even within the medical fraternity
• Lack of funds for dementia services, research and training

The Seven Core strategies summarized in Table 4.2 of the Dementia India Report 2010 are replicated below. This table can provide volunteers some ideas about areas to focus their efforts on.

Notes:

(1)Anganwadi worker: Local health functionaries under the ICDS Scheme
(2)Accredited Social health Activists (ASHA): Lopcal health functionaries under the National Rural Health Mission

The recommendations of the Dementia India Report 2010 are listed as (Chapter 5 of the report):

1. Make dementia a national priority
2. Increase funding for dementia research
3. Increase awareness about dementia
4. Improve dementia identification and care skills
5. Develop community support
6. Guarantee carer support packages
7. Develop comprehensive dementia care models
8. Develop new National Policies and Legislation for PwD

(For a general discussion on dementia and care in India, using data from multiple studies, see: Dementia and caregiving in India)

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