Some serious challenges faced in real-life dementia care situations

Over the past few years, I’ve connected with many fellow dementia caregivers and they’ve shared their personal situations with me even though it was clear that in many cases, I could do nothing but listen. While I can provide some information on dementia and caregiving tools and share some tips, I cannot help counter their major real-life problems, like when they develop back problems because of strenuous care tasks, or they exhaust savings and family silver over expenses, or when their siblings threaten to file property cases against them even as they are fully occupied looking after the person with dementia.

Looking around me, I find very little acknowledgement of several major problems that caregivers face. I mentioned this to a volunteer once, and was told that they could not help in these problems so why talk about “negative” things? Another person said such situations were “exceptions” (but had no data to support this perception). According to me, when low visibility could be driven by shame/ diffidence/ fear of being criticized or of being seen as negative, we cannot assume that the problem is rare. The problem may be common but well-hidden. Unfortunately, hidden problems don’t get attention…or solutions…

In the past I’ve tried to give visibility to real-life caregiver situations by publishing detailed interviews on my website, but I think it’s time to put together a post to acknowledge some problems that don’t get space and exposure.

Three areas that I find where caregivers face major problems are:

Severe shortage of money

I’ve talked to caregivers facing severe financial crunch. To outsiders, they appear like normal middle-class “people like us”, but in the confines of their homes they struggle for even basic expenses, their savings gone, their known sources of income down to minimal or about to stop. They don’t talk of this to others — perhaps out of privacy/ shame, or perhaps because they don’t want people to think they are angling for sympathy or money.

(I once did an interview of one caregiver facing severe money problems and people wrote to me expressing shock; yet I know other middle-class families currently facing major money problems and with no relief in sight yet. Money must be even more critical for families from lower economic sections who didn’t have a buffer of savings and assets to begin with)

Strangely, many people assume that somehow the families can muster up the required money for the patient’s treatment and care, and they are being “stingy” if not enough of being done.

I suspect that outsiders don’t consciously examine their assumptions about the money angle. They don’t estimate the money needed for treatment, checkups and repeated medical problems and for home modifications for the patient. Or the money needed for care, as well as to get a caregiver, because either a family member gives up his/ her job and other responsibilities to take on the caregiving tasks, or attendants have to be hired (and supervised). And let’s not forget that money is needed for other family members, too, including normal household expenses, children and their education, other elders, other illnesses, and other commitments. Meeting these expenses exhaust savings and emergency funds and sellable assets. Earning enough money is difficult to juggle with caregiving work. And relatives are not always forthcoming.

The situation is particularly traumatic where persons in their 40s and 50s develop dementia. If in employment, they start facing problems doing their work, but our employment environment currently lacks ways to let patients continue work in suitably re-defined/ reduced roles. So patients have to quit or try to get early retirement. If the person was handling other responsibilities like managing home and children, they face problems in these, too, and others have to assist or take over (and maybe give up their jobs to care for this person). Family income reduces at a phase when many families have low savings and many commitments — EMIs to be paid, the education of children, elderly parents to be looked after. WHO estimates young onset dementia to be 6-9% of the cases, a significant fraction of affected persons.

We do not have a health care system that reimburses or subsidizes expenses incurred in dementia care. We do not have low-cost services and systems (we don’t have them even if we are willing to pay full market rates). We do not have social security for family caregivers who leave the workforce to look after the patient. We don’t even have good, streamlined systems to help homebound caregivers earn or to get loans to tide them over the crisis.

Money problems are real problems faced by real people. How common and severe they are can only be known if data is collected, but such problems are not rare.

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Lack of support from family/ friends. No one to ask for, no modality to take a break

People don’t want to admit that their families deviate from what is considered “normal” or “good” and in India, we often talk a lot about families sticking together and our culture, and it seems like help is just one call away for people with families.

Yet, I’ve come across many caregivers whose close relatives (siblings/ parents/ children/ close aunts, uncles and cousins) are unconcerned or in denial about dementia and the effort required in care, even if they are living in the same building on another floor, or even in the same apartment. Imagine the stress of a solo caregiver who does all the work and also keeps bumping into unconcerned or critical siblings in the same house or on the stairs or in the same housing colony/ market. Sometimes non-caregiver relatives even accuse the caregiver of ulterior motives, like eyeing the patient’s property.

Some families are supportive; they rally around and share work and expenses, or at least are appreciative of the caregivers. But support of immediate, close relatives is not universal, and we cannot assume caregivers always get such support, howsoever “decent” the family looks from outside.

Of course, the ideal and universal loving Indian joint family is more wishful thinking than based on facts. Even if we look in our circles (our families/ extended families, friends, neighbors, acquaintances), we’ll find plenty of uncommunicative siblings in conflict, bitter complaints, grievances, cruelties, accusations and counter-accusations, broken relationships, family squabbles over property, and cases filed. But we behave as if each such instances are exceptions and feel that overall, in India, family can be depended upon.

Maybe we like to think good things about families. But such wishful thinking/ myth makes persons hide their problems. It implies that India doesn’t need services and systems for elder care or dementia care–we have a great family system, right? And outsiders may not consider helping, thinking–if there actually was a problem, the family would help, and if they don’t help, why should I?

A somewhat related area is the assumption that caregivers can get respite if they want. A typical advice template for stress is: you should take time off and relax and rest. Caregivers who look stressed are told they are not “taking care” of themselves.

Yes, some caregivers are able to accept and implement this advice, but others cannot. This advice, while correct and well-meaning, misses the practical aspect: How can one get respite?

If the caregiver is handling the work solo, if the patient cannot be left alone, if there is no one to take over the work for some hours, how can the caregiver take time off? If friends have started avoiding them and relatives are in denial, if phone calls are not returned or people trivialize their work, whom can the caregiver turn to? It’s not as if we in India have an abundance of dementia-specialized support and services we can use for getting a day off. A caregiver friend complained to me after hearing someone give the same advice repeatedly: Why does he keep rubbing salt in my wounds? Does he think I don’t know I need rest?😦

Let us not pretend that all caregivers can tap on friends and relatives to get time off and support. Some can, others can’t.

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Family members may not be fit enough for caregiving or they may lack the aptitude

I’ve talked to caregivers who ended up with chronic back problems because the patient is heavier and unable to cooperate.

Some caregivers are close to breakdown because they can’t emotionally handle the decline they are seeing, and are also finding home nursing very difficult to handle. They could have handled it for some months or maybe a year or so, but this has been going on for years and it just keeps getting worse.

There are also many caregivers who are elderly and frail (senior citizens looking after spouse/ sibling/ parents), and they are unable to do the physical tasks required, but also unable to hire someone. Some are nervous and overwhelmed, others are tired and overwhelmed. Every day is a challenge and a health hazard for them as they stretch themselves physically and mentally to somehow cope, rushing to get help for every task, catching the cook/ driver/ maid/ building’s security guard/ lift man. Attendants are tough to get, don’t stick, are often absent, and may not be gentle enough and understanding enough. These caregivers just stumble somehow from task to task.

And I’ve talked to persons who are frightened and stressed by the responsibility and decision-making required and all the medical stuff they need to remain alert about related to the patient’s situation. They fear they will break down any day. Sometimes they can’t speak without bursting into tears.

Not everyone has the physical strength for caregiving. We know that, but don’t talk about it.

Also, not everyone has the personality traits needed for sustained caregiving. Somehow, I never see this acknowledged. Yet this should not be so difficult to understand–after all, not all of us can become nurses or doctors or stand the sight of injections or blood. Handling such work for a few days or weeks in an emergency may be manageable, but month after month, year after year?

People often assume that family members will somehow do whatever is needed for the care. They will (magically?) possess/ acquire the required physical fitness and the mental/ emotional profile to handle the work and responsibility for as long as needed. The assumption is “if they love the patient and have a good sense of duty, then things will work out”.

It doesn’t make sense to me. To take a crude analogy, we don’t expect a layperson to become an electrician overnight if our home needs major electric repairs, howsoever sincerely this layperson wants the home safe from electrical accidents. Yet so often, people expect caregivers to handle home nursing and other care responsibility if someone gets dementia. In institutional care, the work is shared across professionals qualified in several disciplines who work together as part of a job to do what is needed; expecting all this skill and stamina from a family caregiver is unrealistic and unfair.

(If love is all that is needed, it’s time we removed exams and slashed the content of professional courses like nursing and occupational therapy)

We lack systems that help caregivers learn the required techniques for coping with all aspects of the work–physical, mental, emotional. We lack counseling and support that can be used to correct the course or cope with stress or get advice/ relief when overwhelmed. We lack services (paid or subsidized) to take over tasks caregivers cannot do. We lack even the most basic respite facilities.

We even lack an environment where caregivers can openly talk of their problems, fatigue, helplessness, and isolation.

It is unfortunate enough that we cannot help, but at least let us stop pretending it’s easy. Let’s not submerge caregivers under the “it’s just a family living together label” and render them invisible for most purposes.

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And so…

These are some of the more common problems I keep hearing about. As I said, in situations like this, apart from offering a few suggestions, all I can do is listen and acknowledge the situation. Often, just hearing the story is overwhelming. I can understand why persons who are (currently) not facing such problems prefer to ignore them. It is far more comfortable to assume that caregivers can handle stuff if they try hard enough, are creative, and are loving and dutiful. It is tempting to get away by lofty statements on faith and trusting “miracles” and “the will of God” and issue reassurances like “it will be okay, don’t worry” or even shrug and say, “its karma, what can one do!”

Yet if merely thinking about the situation makes us squirm, think of persons living through it 24 x 7…

Before we can create solutions, we need to acknowledge the problems. Not just talk of “dementia epidemic” and quote large numbers, but examine the variety and components of challenges for which caregivers need support/ solutions. Hence this post. It’s my way of acknowledging the existence of extreme situations in caregiving, and hoping that concerned persons discuss these and look for ways to mitigate problems.

Related link: Interviews of dementia caregivers from India, published on Dementia Care Notes

This blog shares my personal experiences/ opinions/ insights as a dementia caregiver and volunteer. For structured information about dementia (what it is, how it affects persons, diseases that cause it, etc.), caregiving aspects (like communication, helping patients, handling challenging behavior, late stage care), resources (e.g., facilities in various cities) or caregiver interviews, etc., please check my website Dementia Care Notes (or its Hindi version, Dementia Hindi). Also, check my channel with English and Hindi caregiving videos.

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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.

2 Responses to Some serious challenges faced in real-life dementia care situations

  1. PatriciaBrennan says:

    Thank you so much for your valuable insights!!

  2. Rama Murali says:

    Hi Swapna. This is an excellent post and I really think you highlight some of the challenges that caregivers face that are rarely discussed openly. Dealing with the specifics that you outline here are really essential to tackling dementia and caregiver health. Thank you for boldly writing this and inspiring other caregivers that can really relate to your insights and experience!

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