ElderBranch interviewed Dr. Gitlin to discuss her paper, “Correlates of Quality of Life for Individuals with Dementia Living at Home: The Role of Home Environment, Caregiver, and Patient-related Characteristics.” Dr. Gitlin wrote the paper, along with Dr. Nancy Hodgson of the Johns Hopkins University School of Nursing, Dr. Catherine Piersol of Jefferson Elder Care, Thomas Jefferson University, Edward Hess formerly of the Johns Hopkins University School of Medicine, and currently with the Anschutz Medical Campus, University of Colorado, and Dr. Walter Hauck of Sycamore Consulting LLC.
What led you to research this topic? Why is it important and how does it augment existing work in this area?
I have worked in the area of family caregiving and nonpharmacologic management of persons with dementia in collaboration with health and human service professionals for over 25 years. My teams have sought to develop and test a range of strategies to help people with dementia remain at home and maintain quality of life. Most of my research has been to test interventions that can improve caregiver skills and quality of life of persons with dementia.
As we conducted our intervention studies, what became apparent is that families had a lot of unmet needs. In contrasting our experience to what was in the literature, we did not believe previous research adequately addressed what life is like for people living with dementia in their homes. Further, while there is a robust body of research on the quality of life of people with dementia, previous studies have not specifically examined the factors that contribute to a person’s own perceptions of their quality of life that we can modify or influence. This was the basis of our study – to identify factors contributing to perceived quality of life and that are modifiable.
Keep in mind that there isn’t a cure for dementia. Thus, one of the treatment goals for people with dementia, although not well operationalized in our clinical care programs, is to maintain and enhance quality of life of families managing this degenerative disease process. People with a diagnosis of dementia and their family members typically do not receive comprehensive care with the express goal of helping them maintain quality of life.
Please describe your study. What were your in-going hypotheses and how did you test these?
We had two objectives. First, to describe various conditions that may be present in the home that may put the person with dementia at risk for poor quality of life. We were interested in a wide range of conditions (e.g. safety issues in the physical environment, the social environment, etc.) that had not previously been examined in the quality of life literature.
We started with a very descriptive approach: how many risk factors were present in the homes, what did the home environment look like, and what were the communication patterns between caregiver and the person with dementia like.
Secondly, we wanted to look at the relationship between these factors and how the person with dementia rated their own quality of life and then compare their ratings to how the family member rated their quality of life. We wanted to see if the actual influences on the person with dementia’s quality of life matched the family or caregiver’s perceptions of the influences.
Consistent with previous research, we expected that people with dementia would report their quality of life as higher than their family members would report. However, we expected there would be different factors that would contribute to quality of life for the person with dementia and their caregiver, but we didn’t know what those factors would be.
Our descriptive study has important implications; if we can identify factors in the home that may place the person at risk, then we can design care approaches to help people better live at home. Also, if there are differences between how people with dementia and their families view the situation, then it would be important to include both perspectives in patient-health provider encounters.
What were the key findings from your research?
The first important finding is that we found that most people with dementia in our study had on average of nine neuro-psychiatric behaviors and the vast majority had many difficult functional challenges at home. Most were at a fall risk, and over half of the sample reported some to a lot of pain. Clearly, people with dementia are living at home with lots of different kinds of negative conditions yet these conditions can be addressed.
In the home itself, we found that there was an average of eight hazards. For example, bathrooms did not have grab bars to make getting in and out of the tub safer. Many homes were cluttered with objects in pathways that could present themselves as tripping hazards.
We also found that over half of the sample had an unmet environmental need. That is, caregivers reported that the person with dementia required or they themselves needed some kind of an assistive device to provide better care; or that the person with dementia had difficulties ambulating in the home and could have benefited from a walking device.
With regard to family caregivers, we found that over a third of the sample reported depressive symptoms of clinical significance. Yet, many viewed caregiving in a positive way. What was disconcerting was the negative communications used with persons with dementia. 53% reported screaming at the person with dementia, 52% reported scolding the person, 40% indicated they used a harsh tone, 27% indicated they withdrew from the patient, 19% reported yelling and 15% threatened sometimes or always as part of their daily routines.
Clearly families need skills training in how to effectively communicate. As communication is often a contributor to neuropsychiatric behaviors, skill building in this area is critical. Effectively communicating with a person with dementia is a skill. We have several trials that have shown that caregivers can learn to communicate better.
We then wanted to see what factors influenced the person’s self-rated quality of life. We found the strongest predictor to be the number of health conditions. The more co-morbidities, the more they rated their quality of life as poor.
On the other hand, how the caregiver communicated didn’t seem to matter to the person with dementia in terms of quality of life. How the environment was set up also did not seem to matter except in one way: having difficulty navigating in the home environment and being unable to engage in the environment effectively was associated with lower self-rated quality of life.
The other important finding is that the person with dementia and the caregiver did differ in terms of their perceptions of quality of life. The caregivers’ perception of quality of life for the person with dementia was lower and was related to the number of health conditions (similar to the person themselves), but it was also associated with the number of behavioral symptoms and negative communications used by the caregiver. That is, caregivers perceived that the person with dementia had poorer quality of life if they had neuropsychiatric symptoms and if the caregiver was using more negative communications. We also found that the more the caregiver enjoyed the positive aspects of caregiving, the more they rated the person’s quality of life as high.
Interestingly enough cognitive status was not related to quality of life as perceived either by the person with dementia or the caregiver. So quality of life is independent of the level of cognitive decline and has more to do with the external factors of the living context.
What kinds of changes are required to achieve the comprehensiveness of care that you think is so important for dementia patients living at home?
Anybody with a diagnosis of dementia needs to be followed using a collaborative team approach. In our current system of care, the primary care doctor can’t possibly address all of the psychosocial, medical and environmental concerns as the disease progresses. We have to expand dementia care to not just be about the medical treatments; care should be holistic and comprehensive and include ongoing assessments of cognitive changes, behavioral changes, functional changes, and how people are managing at home and implementation of nondrug strategies.
Any change in cognitive or functional status should trigger another home visit by an occupational and/or physical therapist to help provide strategies to maintain quality of life, reduce fall risk and address unmet needs.
So long as our national focus remains only on cure, the lives of millions of people remain somewhat dismissed. Our study along with our other intervention trials shows that there are simple strategies that can be implemented now which can improve the lives of families. This is good news from the point of view that we can improve the lives of people living with dementia, but we need to expand the definition of care to include the psychosocial and physical environmental needs of this clinical population.