Introduction
Good afternoon. I am pleased to be a part of this incredible community of occupational therapy for almost my entire adult life. This afternoon I am looking forward to discussing caregiver wellbeing for those taking care of people with dementia. This topic is reflective of what I have been doing and have been interested in for the past decade or so. It is also something I had a degree of uncertainty about as a practitioner.
- Dementia
- Caregiving
- Depression
- Burden
These are the key terms we are going to use today. Dementia is a progressive irreversible, neurodegenerative disorder. It is primarily caused by two abnormal structures within the cortex of the brain. The culminating disruption and death of nerve cells leads to memory failure, problems completing activities of daily living, personality changes, and a myriad of behavioral symptoms. To receive a diagnosis of dementia, you must have an impairment affecting two or more areas of brain function.
There are generally two broad categories of caregivers. Formal caregivers tend to be paid, while informal caregivers are unpaid or relative-based services. These are generally spouses, children, and the like.
Caregiver depression and burden are two factors that make up the most common outcomes in caregiving research. They have been described as interrelated particularly in cases of dementia. Oftentimes, when we talk about caregiver health or more specifically caregiver wellbeing, those are the two components that we are looking at. Constructively, we tend to describe depressive symptoms as a condition of burden. As one is increasingly burdened by their life or caregiving situation, they begin to show signs of clinical depression and even major depression.
Background
- Dementia / Alzheimer’s (AD)
- Vascular
- Lewy Body
- Mixed
- Frontotemporal
- Etc.
- 5.8 million Americans living with AD (Alzheimer’s Association (AA), 2019)
- 3.5 million women
(Alzheimer’s Association. (2019). Alzheimer’s disease facts and figures. Alzheimer’s & Dementia,15, 321-287. doi: 101016/j.jalz.2019.01.010)
We tend to co-mingle the terms dementia and Alzheimer's disease. Though, it should be acknowledged that while Alzheimer's is certainly the most common form of dementia, it gets the most attention. This is because it consists of 60 to 80% of dementia cases; however, it is not the only form of dementia. You may have heard of vascular dementia, Lewy Body dementia, it is associated with movement control and Parkinson's, mixed dementia, frontotemporal, or other types of dementia. In its broadest sense, dementia is not slowing down, and we can partially attribute that to our aging population. There are currently around 5.8, million Americans living with dementia. One in three Americans will die with it. It is estimated that there are nearly 27 million people in the world with dementia. Like everything else, it seems to hit women the hardest, accounting for more than 60% of cases.
- 16 million caregivers
- More than 80% of unpaid/informal caregivers (family, friends, etc.)
- 2/3 Women
- 1/3 daughter; 1/3 wife (more common than husband)
- “Caring” approximately 22 hours a week
- Estimated 18.5 billion hours in 2018 (valued at $234 billion)
- Total lifetime cost caring for someone with dementia $350k
(Alzheimer’s Association. (2019). Alzheimer’s disease facts and figures. Alzheimer’s & Dementia,15, 321-287. doi: 101016/j.jalz.2019.01.010)
To care for these nearly 6 million people with dementia, there is a cadre of 16 million caregivers, and most of them are considered informal. This, again, means they are not being paid for their efforts, and these are mostly women, generally eldest daughters and wives. Remember, women are most afflicted by the disease. And, even with this stat, women are still more likely than their male or husband counterparts to take up the care of a loved one. National averages suggest caregivers are caring for an average of 22 hours a week for people with dementia. In a study we completed in 2017 with 160 living caregivers of veterans with dementia, we found much higher numbers. Their caregivers reported spending about 17 hours a day caring for their loved ones with around eight of those hours being in direct assistance, helping with ADLs and IADLs. Annual cost estimates, completed by the Alzheimer's Association, calculated the societal benefit of all this informal, unpaid labor in 2018 to nearly $234 billion. The calculated lifetime cost of caring for someone with dementia is around $350,000.
- Provision of “extraordinary care” exceeding what is usual
- The imbalance of care recipient demands relative to CG resources can lead to:
- Psychological changes
- Social Isolation
- Financial challenges
- Increased medical susceptibility
- Greater risk of mortality
- Neglect/Abuse
- Institutionalization
(Schulz, R., & Martire, L. M. (2004). Family caregiving of persons with dementia: prevalence, health effects, and support strategies. The American Journal of Geriatric Psychiatry, 12(3), 240-249.)
Schultz and colleagues have described, the informal caregiving experience as the provision of extraordinary care, exceeding the bounds of what is normal or usual in family relationships. This involves the significant investment of time, energy, and finance but also the performance of tasks that are unpleasant, uncomfortable, stressful, and exhausting. The wear on caregivers is not always sustainable. We often see psychological changes, the primary focus of our discussion. Social isolation is also common. They may also have to forfeit relationships with friends and family that do not completely understand the situation. Financial challenges are another area of concern, and we will explore this shortly. There is increased medical susceptibility with caregivers getting sick more often and for longer periods of time. Medical susceptibility can, unfortunately, lead to institutionalization for the person with dementia as well if that caregiver is unable to adequately care for them during their sickness. Caregivers, when compared to persons of their same general characteristics who are not undertaking the same responsibilities, are at a much higher risk for mortality or death. Obviously, this can have negative impacts on the person with dementia as well. Imbalances in lifestyle and the progressive wear can also regrettably lead to instances of abuse or neglect which is particularly heartbreaking as the caregiver likely went into that situation without those intentions. It may also be that they entered the caregiver role unwillingly, in the first place.
- 40% to 70% of caregivers have clinically significant symptoms of depression
- 25-50% meet diagnostic criteria for major depression
- More than 70% percent of female caregivers report physical or emotional exhaustion caused by their caregiving duties leading to:
- Fatigue
- Headaches
- Weight gain
- Difficulty sleeping
- Back pain
(Zarit, S. H. (2006). A research perspective, in Family Caregiver Alliance, Caregiver Assessment: Voices and Views from the Field (pp. 12-37). San Francisco: Author.)
Around 40 to 70%, some authors have even said as high as 80% of caregivers, have clinically significant symptoms of depression. Twenty-five to 50% of those meet the criteria for major depression. As we have discussed, females tend to shoulder most of the disease. It has also been reported that over 70% report physical or emotional exhaustion. Female caregivers bearing the brunt of the disease we tend to see clinical signs of general fatigue, headaches, weight gain, sleep disruption, and back pain, all for reasons you might imagine.
What We Know
- Correlates
- Age
- Relationship type
- Gender
- Ethnicity/race
This fourth of July weekend, I was staying with my teenage nephew and niece rattling off some facts and figures about the harms of premature alcohol use in adolescence. To which my niece retorted, "Correlation does not imply causation Uncle Paul." Fundamentally, she was right. Correlation is a statistical technique that tells us how strongly a pair of variables are related and how they change together. For example, the number of fast food visits and weight gain might appear related, but it does not always work. For example, the high school soccer team might go to McDonald's twice a week after practice. Physical exercise might be a lurking variable that is preventing a linear relationship between weight gain and McDonald's visits in this case. I do not want to get too far into the weeds here other than to say as sample sizes and reviewable data increases we can use some of these historical correlates to inform our clinical judgments.
A number of previous studies have highlighted age as a correlate of caregiver wellbeing. Interestingly, it may not be as directional or natural as you would think. Older caregivers tend to fare better than younger counterparts. Some of that may be due to some of the life pressures younger adults experience like climbing the business ladder and "keeping up with the Joneses." Some of those cultural pressures may not be as present for aging adults as they are expected to care for a loved one. It may also be that an oath has been taken between the aging adults like "till death do us part" for example. There may be more ownership of the situation and fewer distractions for an aging adult. For example, they do not have to contend with their own children.
We also find an association with relationship type in caregiver wellbeing. Older adult caregivers usually have had a long-term intimate relationship with the client. In contrast, children, nephews, and nieces may have never even considered or intended to care for the aging adult. Spouses of care recipients tend to score more favorably on health skills than adult children and alternately-related caregivers.
Closely related to age and relationship type is the influence of gender on caregiver wellbeing. Female caregivers tend to score more highly on depressive inventories than their male counterparts.
Ethnicity and race are also considered in caregiver wellbeing. Historically and in broad terms, Hispanics and African Americans tend to report lower depressive and burdened scores than Caucasians. There has also been some work done suggesting that terms of burden and depression are not as highly endorsed or accepted by some of those communities that may confound some of the ethnicity findings.
- Correlates
- Level of formal education
- Financial status
- Level of assistance needed
- Behavioral challenges
- Leisure/time away
We also want to consider the level of formal education in the caregiver. Education has been predictive of depression and burden in previous studies, and we have found this particularly so in caregivers with less than a high school education. Financial status naturally is considered. Particularly, incomes that are less than $10,000 annually may influence caregiver wellbeing.
The function or level of assistance needed by the person with dementia is considered as a condition that could decrease wellbeing. In past studies, the cut off has generally been when someone needs assistance with two or more activities of daily living.
There has also been much writing on how the behavioral symptoms displayed by a person with dementia can influence caregiver wellbeing, suggesting that more outward symptoms may be most detrimental. Yelling, hitting, and spitting are found to be more detrimental, than inward symptoms like apathy or depression in one with dementia.
Finally, caregiver leisure or time away from the situation can influence wellbeing as you might imagine. This can be extrapolated from reports of hours spent caregiving as well as in time caregivers have spent performing leisure activities.
Measuring Caregiver Health
- Formal Assessment
- 10-item Center for Epidemiologic Studies Depression Scale (CES-D)
- The Zarit Short Form Burden Scale
- Agitated Behavior in Dementia Scale (ABID)
- Neuropsychiatric Inventory (NPI)
1. Bédard, M., Molloy, D. W., Squire, L., Dubois, S., Lever, J. A., & O'Donnell, M. (2001). The Zarit Burden interview a new short version and screening version. The Gerontologist, 41(5), 652-657.
2. Irwin, M., Artin, K. H., & Oxman, M. N. (1999). Screening for depression in the older adult: criterion validity of the 10-item Center for Epidemiological Studies Depression Scale (CES-D). Archives of Internal Medicine,159(15), 1701-1704.
3. Logsdon, R. G., Teri, L., Weiner, M. F., Gibbons, L. E., Raskind, M., Peskind, E., ... & Thai, L. J. (1999). Assessment of agitation in Alzheimer's disease: The agitated behavior in dementia scale. Journal of the American Geriatrics Society, 47(11), 1354-1358.
I have painted a fairly bleak picture. You may be wondering how we go about formally measuring such correlates or how we can properly capture the sort of information. There are some good formal instruments out there to measure caregiver wellbeing as it is tied to depression and burden. The Center for Epidemiologic Studies Depression Scale or CES-D is quite popular. There is also a shortened 10-item version which is often used in research and sometimes in practice. As clinicians and researchers, we tend to aim for brevity, particularly if instrument characteristics remain strong. The Zarit Burden Short Forms are also used regularly. It is a short one to two-page form and can give you a pretty good baseline of caregiver compromise. The nice thing about these two instruments is that their norm-referenced, meaning the numbers really can tell you about the potential clinical implications of the score. For example, for the CES-D, scores of 10 or greater are predictive of significant depressive symptoms. Likewise, the Zarit scores of 17 or higher indicate unhealthy levels of burden. You can also look more formally at behaviors which is one of the most challenging aspects of caregiving and dementia. We have also done some preliminary work suggesting that caring for people with four or more behavioral symptoms seems to be the clinical tipping point to influence caregiver health. These scales, the Agitated Behavior and Dementia Scale or the Neuralpsychiatric Inventory can serve as a checklist to identify such behaviors such as agitation, aggression, hallucinations, delusions, and wandering. Not only can they help you identify the behaviors, but they can help you understand how often they are occurring and how seriously it is impacting the caregiver.
- Useful Screening
- Level of formal education
- Financial status
While I think we appreciate the utility of formalized assessments to learn more about our clients, we understand we cannot always or perhaps more strongly can rarely spend that much time delving into formal questionnaires or assessments during our evaluations or interventions. However, here are some things we can do. We can inquire about the caregivers' level of formal education. I know what some of you are thinking. "How can I slip that into the conversation without really upsetting someone?" These likely will not be questions that we are asking at our first meeting.
