Dementia caregivers: some thoughts

Some months ago, I found myself wondering about how the term dementia caregivers is often used for the entire range of experiences and needs of caregivers trying to support persons with dementia. We have caregiver manuals, caregiver trainings, and many other resources aimed at this entity: dementia caregiver. But are all persons helping dementia patients called dementia caregivers? Are their situations and needs similar enough for the same caregiver training to benefit them all? What are the pros and cons of this label?

I’ve met a range of persons who consider themselves dementia caregivers. Some are busy with caregiving chores 36 hours a day. Some are more like supervisors for a team of hired attendants and support staff, managing the care and handling the responsibility, but not doing much of the hands-on work. Some are family members of the patient, living in the same house but not participating in the care unless there is a crisis (care is handled by a primary caregiver, and these persons are secondary caregivers). Some are long-distance caregivers living in a different city, but they make daily phone calls to talk to the person with dementia or the live-in sibling caregivers. There are male caregivers and female caregivers, caregivers who are teenagers, middle-aged, or elderly. And so on. The range of type of care and responsibility across “dementia caregivers” is wide. I’ve even met persons whose relative is living in a respite care, and they make weekly or fortnightly trips to meet them for a few hours, and they, too, consider themselves caregivers.

On the other hand, I’ve also met persons who are supporting someone with dementia for some hours a day or even full-time, but dislike the word “caregiver.” They see themselves as “family” and find the caregiver label insulting.

I’m sure there are formal definitions of the word caregiver, though perhaps not as formal or easy to apply as the word “engineer” or “doctor” or as relationships like “son” or “sister”. But persons who consider themselves caregivers don’t know or apply these formal definitions. Typically, they are close to someone with dementia, and they feel their actions and decisions affect this person, and so they consider themselves caregivers.

How important, then, is it for persons involved in the care of a person with dementia to consider themselves “caregivers”? Does it matter at all?

The way I see it, persons involved in the care of someone with dementia can handle this role and responsibility better if they have:

  • A good understanding of dementia and the way it impacts the person
  • Knowledge of various caregiving tools and techniques, such as ways to communicate, to help the person, to handle challenging behaviour, to make home empowering and safe for the person, and so on
  • A supportive environment with sufficient dementia awareness and also enough facilities and services

Regardless of whether a person supporting a dementia patient identifies with the “caregiver” label, this person can handle caregiving more easily and effectively with the help of the three things listed above. Using the “caregiver” label helps because it may help us seek knowledge and skills and services designed for caregivers. It gives an identity and enables approached others in similar situations and getting company and support. When persons providing care think of themselves as supportive family members, they may reject any tools or advice carrying the “caregiver” label and not see them as beneficial. For example, they may assume that all they need to help the patient is love and consideration, and ignore the benefit of communication techniques and tips to assist in daily activities. They may not appreciate that communicating with someone who has dementia may be different (compared to how we communicate with cognitively alert elders). They may not avail the pool of knowledge and tips that other caregivers have gathered.

One problem in my opinion is that most caregiver material is prepared for some generic caregiver, and usually does not discuss how to selectively use the material given the profile/ situation of the caregiver. For example, the needs of a youth caregiver looking after an elder with dementia would be different from that of an elderly spouse of a person with dementia. Caregivers have to sift through a caregiver manual to see what is applicable for them, and they may dismiss all advice because the first few pages they read look totally irrelevant. Also, volunteers who are supporting caregivers have to tune their advice rather than just assume the general advice will fit everyone.

Caregiver advice is definitely not a “one size fits all” and material designed for caregivers cannot be directly applicable for all caregiving situations.

In November 2013, I had the opportunity to speak at the 18th National Conference of the Alzheimer’s and Related Society of India (ARDSI), held in Guwahati (Assam) in November, 2013. The topic was “Who are we: Introducing the caregivers”, and I discussed some of the aspects I mention above. I’ve uploaded my presentation to slideshare.net and included it below. (You can also view it directly on slideshare.net at this link)

I’d like to add that caregiver material must also be tuned to the culture and country. This topic is so big that it deserves its own blog post. We know that care environments and challenges would be very different in a village in Madhya Pradesh compared to, say, a suburb of London. We need material that is easy to adjust and apply in our settings. We need material that understands our way of life, and our culture and society. Examples and case studies should be relevant for us. We need material in our Indian languages, and often this is not just a matter of translation, but of rewriting. But as I said, this is a topic by itself…and one I have written about before and will probably write about again.

Meanwhile, do feel free to share your comments below (remember, you can share your thoughts anonymously if you prefer)

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

One Response to Dementia caregivers: some thoughts

  1. While not a dementia caregiver, I found this post relevant. I’m an at-home, long-term caregiver for a parent with several chronic conditions. I’ve found helpful resources, but agree that the term caregiver is used loosely or rejected, and advice is often too general to be useful. Thank you for your insights and for pointing in directions the “caregiver community” needs to go to provide targeted information and support for those who give care.

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