No Balm in Gilead — Why People Think Respite Doesn’t Work and Why They’re Wrong
The old adage says give a man a fish and he eats for a day, but teach a man to fish and he’ll eat for a lifetime. This assumes the man knows how to cook the fish though. The trouble sometimes in providing someone with a resource, especially money or time, is if they don’t know what to do with that resource once they get it. If I give you a fish, and say it’s ready to eat, but you don’t know how to cook it, frankly you might get yourself sick. What if that man then says, “Well, people shouldn’t eat fish.” We’d all scoff at his bizarre conclusion.
Similar conclusions are happening with respite, though. In the case of respite, the service provides the person with dementia (PWD) with a temporary stay or temporary care, while the primary caregiver takes time off, in the way of a substitute caregiver. The problem with giving people time though, is as with fish, if they don’t know what to do with it once they have it, they can misuse it or at best be unaware of how to optimize time off. Do I catch up on chores? Do I take time for myself? Do I spend that time with others and reconnect? As it is, I think this is a normal feeling to experience day-to-day. This feeling is further amplified in the case of a caregiver whose life is tied largely to sacrificing time for someone else.
As a result, sometimes people who have used respite care will sometimes judge it as ineffective or as unhelpful. Similar to the man with the fish though, we might say, it’s not that the service or product is ineffective; it’s that caregivers who are accustomed to having no time do not know how to suddenly adapt to having what feels like a surplus of time.
This is troubling though because governments and insurance companies listen to this feedback when deciding what programs to fiscally support. If the surveys and evaluations for respite return negative, they may consider such programs ineffectual and unworthy of support -- when in fact, it’s not the service but the user who needs help making the service work best for them. Respite is an effective solution deserving our attention, but it will die out if we don’t improve how its users benefit.
Let’s begin by really defining respite and its definition.
“First things first…”
A definition.
Respite is expected to provide caregivers the freedom and support they need, by allowing them time to tend to their own wellness, social and family relationships, and other aspects of their daily lives that have been neglected due to their overwhelming caregiving tasks (Evans, 2013).
Simply put, respite is a substitute service -- enabling the primary caregiver to take a break from caregiving which would otherwise have no off days ando no vacation time.
It’s a service that relieves the user of a major responsibility for a temporary period of time. How could this be negative? And yet, we find that caregivers can be dissatisfied with this service.
A definition of the problem.
In one of our own pilot studies, which we discuss in more detail in the next section of this article, we unexpectedly found that 46% of the caregivers were not very satisfied with how they had spent their respite time (Lund et al., 2009).
This statement feels odd because it would be like parents stating that “babysitting is ineffectual”. Not one particular babysitter or sitter service, just “babysitting.”
The researchers dig deep making this claim:
The main idea of this research then.
We will argue in this article that a key mechanism missing in the relationship between respite and caregiver outcomes is how caregivers use their time while receiving this service. (Lund et al., 2)
Unfortunately, what they’re really saying is people don’t know how to use their free time. And although effectual time management is generally difficult to master, when your livelihood depends on your ability to optimize your free time effectively, it’s essential to develop this skill.
I think we all already do this when we say things like, “When I finally get some time off, I’ll take care of that house project.” “When I get some time off, I think I’ll go on vacation.” When we hit the holidays, I think I’ll actually work on that skill again.” And yet how frequently do we fail to deliver on these things?
“Maybe people shouldn’t go the gym.”
Like any use of dedicated time, it’s important to know what you’re doing during that window of time. Going to the gym can be an intimidating experience for many people because they can begin to feel lost thinking, “Where do I even begin?” In this case, one must define what one will do with the time dedicated to the gym which is further defined by goals.
Goals: Lose weight → cardio
Goals: Bigger biceps → curls, pump iron
Goals: Have fun and be active → Zumba, spin, racquetball
As banal as it might be to say so, it’s worth stating that respite goals are necessary to help make better use of time spent.
A Disparity in Goals
Also, Greenwood, Habibi, and Mackenzie (2012) suggested that we need greater clarity about what respite is intended to achieve and clear evidence of a positive impact of respite. (Lund et al., 4)
If we understand the intentions of respite, and if we know how to understand how to measure our approach toward those intentions, we can measure the efficacy of our movement toward those goals. The researchers in this particular body of work suggest using interventions and counseling sessions.
What some people would suggest
Caregivers with already established patterns of respite-time use could still benefit from an intervention that begins with an assessment of their needs and desires and encourages a good match between an assessment and behavior plans to best meet their perceived needs.
The preferred strategy would be to begin with three to four weekly sessions, followed by three to four biweekly sessions, and a phasing-out period of two to three monthly sessions. The intensity and frequency of facilitator contact should be decreased over time because the participant should become more competent in completing the SOC tasks independently. Furthermore, in an effort to provide choice and to accommodate unique caregiver needs, caregivers should be able to individually select the total number of intervention sessions. For example, they could have a total of 8 to 11 sessions over 5 to 6 months. (Lund et al., 5)
To me this becomes a little tricky. We begin to tamper with a serious life-style difference between people who want goal accountability and people who don’t wish to structure their lives formal goal setting. Respite shouldn’t be limited to those given counseling and intervention -- though I believe that perhaps more would benefit from it if counseling were offered as a default benefit. For example, when someone signs up for a gym, they typically default to having the new member perform an assessment with a trainer. Not only does this trainer help to onboard the new member but it makes the gym less overwhelming for newcomers starting up. Simultaneously, a veteran gym-goer signing up for a new gym may decide to opt out of this service.
The Bottom Line
We cannot continue to assume that simply having respite time available will automatically result in measurable benefits to caregiver’s well-being. (Lund et al., 10)
Either way, this statement holds truth in that we cannot assume that every caregiver will utilize respite time to the best of their availability, just as much as we cannot assume that money thrown at a gym membership guarantees weight loss.
“No More Balm in Gilead”
At this time, we know there’s enough research to show that respite is an effective solution and treatment. However, we’re also finding that respite isn’t showing that in practice.
The Big Issue
Unfortunately, respite services have not shown the positive impact on caregiver well-being that has been expected. (Lund et al., 12)
This then begs the question: Is respite ineffective, or is its current application ineffective? Are we measuring the wrong metrics to determine respite’s efficacy? Or is the solution really just a non-solution?
The researchers would argue we should continue to support respite.
We should improve this though...
In short, respite services for caregivers should remain a very high priority as a strategy to help and support them, but we need to direct equal attention to improving the effectiveness of the service by focusing on time-use as a key mechanism. (Lund et al., 11)
To return this thought to the gym analogy, it resembles a new gym goer saying the gym is ineffectual because he isn’t losing weight. One has to ask -- is it the gym? Or is it lack of education on proper use of time in the gym that leads to his judgement of the facility as a faulty solution?
The problem with judging respite as an invalid boon to caregiving would be the potential dissolution of respite services and support for them altogether. Ending support for respite programs emotionally, scientifically, and fiscally may indefinitely eliminate a remedy that simply needed more time to perfect itself.
The researchers phrase this in this way:
The DoomsDay
Otherwise, there is a risk that policy-makers could conclude that respite is not worth further investment of already limited resources and direct them elsewhere. As a result, far too many caregivers will continue to experience long-term adverse consequences as remaining options for support are depleted. (Lund et al., 12)
Presently, respite remains one of our most effectual answers to the growing burden of caregiving. Until better solutions are discovered, it is nonsensical to eliminate support for the simplicity of “substitute caregiving”. That said, just as proper weight loss happens in the mind through a mixture of habit and diet alteration, perhaps mental relief from caregiving happens more holistically as well. It’s not enough to teach the man to fish; he must enjoy eating it.
Works Cited
Lund D et al. (2014) Time for Living and Caring: An Intervention to Make Respite More Effective For Caregivers. International Journal of Aging and Human Development, 79(2), 157-178. doi: 10.2190/AG.79.2.d
Evans D. Exploring the concept of respite. Journal of Advanced Nursing. 2013; 69(8):1905–1915. doi: 10.1111/jan.12044. [PubMed: 23157453]