Shortly after my latest blog, entitled "I'm Engaged," I was delighted and honoured to receive an email from Dr. Laura Gitlin, Professor & Director of the Center for Innovative Care in Aging, Johns Hopkins School of Nursing, I am quite familiar with Dr. Gitlin's exceptional work and decided to email her to ask if she would be interested in being interviewed for my next blog. I'd like to thank her for agreeing to this request and for dedicating her research initiatives to improving the lives of those affected by dementia.
Note: GE is Gail Elliot and LG is Dr. Gitlin
GE: How do you define neuropsychiatric symptoms of dementia and why do we need to understand this term?
LG: While there is not an agreed upon term, neuropsychiatric symptoms or behavioural and psychological symptoms (also referred to as behavioural expressions), are core clinical features of dementia. The science is still evolving as to the mechanisms by which behaviours (e.g. -- agitation, aggression, rejection of care) occur. They are almost universal, occurring across disease trajectory and etiology. Most importantly, these symptoms cannot be explained by cognitive status alone. Rather, behaviours appear to be a consequence of the interaction between brain changes and other factors related to the person (e.g. -- pain, poor sleep, fear, underlying infection), the physical environment (e.g.- under or over stimulated environments) or the caregiver (e.g. -- use of complex communications, distress). Addressing behaviours is complex. There may be one or more factors contributing to a particular behaviour, and factors differ for behavioural symptoms.
GE: I love this definition. It fits perfectly with the WOW model I use, which includes needs, interests, skills and abilities in each component part of the model.
W = Who (brain and behaviour, past/present)
O = Observations (including environment)
W = What will you do? (Your article beautifully captures this.)
GE: What do caregivers need to know?
LG: I think families need to know your model or the one's that we use that are similar in intent. Caregivers (family or formal providers) need to understand that behavioural symptoms are a core clinical feature of dementia; they are not intentional, purposeful or negatively directed at them. Some behaviors may be expressions of unmet need (e.g. -- unaddressed pain, thirst, hunger). There are some known risk factors for some behaviours. For example, boredom and lack of predictable routines can lead to agitation. Finally, caregivers can benefit from learning simple strategies to prevent, reduce or eliminate behavioural symptoms.
GE: What is a tailored activity program?
LG: Most people with dementia have nothing meaningfully to do and this can contribute to behavioral symptoms, including agitation, anxiety and feeling a loss of purpose and control. For activities to be effectively offered to individuals with dementia, they need to be tailored to the interests and abilities of that person. There is no magic bullet or single activity that benefits everyone. With my team, we developed a program, New Ways for Better Days: Tailoring activities for persons with dementia and caregivers. Delivered by occupational therapists, we identify a person's interests and abilities, and then train caregivers in using activities in daily routines. I know that interests, abilities and the environment are factors you also focus on with the WOW model.
Families often know what a person with dementia is unable to do; but they are not informed as to what the person can still do. We assess function (physical, executive, cognitive, sensory and social), caregiver readiness and daily routines and features of the environment that will or will not support selected activities. We train caregivers to use three different activities at different times of the day/week. While these "Activity Prescriptions" are designed to enable the person with dementia to engage in an activity that provides pleasure, caregivers must be willing to set them up.
GE: Has your research shown that activities reduce neuropsychological symptoms of dementia?
LG: Yes absolutely. We completed a rigorous small, randomized trial showing that this approach reduced the number and frequency of behavioural symptoms. It also increased engagement and, for caregivers, it dramatically decreased the number of hours spent addressing behaviours and time providing care. We have other trials currently in progress to replicate and extend these results. Other countries -- Scotland, Australia, Brazil -- have adopted our approach and are similarly finding great improvements in quality of life of families.
GE: Does education and support really reduce costs (psychosocial and financial)?
LG: No question. There is a robust body of research showing that a wide range of strategies, including providing caregivers with education, skill building, strategies for modifying the home environment and strengthening their support network, can ease daily challenges, reduce stress and burden that may be experienced. A few programs have shown that effective support of families can also help them care for a person with dementia longer in the home, a goal of most families. However, education alone is not sufficient -- families also need a supportive network, respite opportunities, time for their own self-care and ways to prevent, manage or reduce behavioural symptoms that are challenging.
GE: Do you think your research should be used to influence changes in caregiver education and support?
LG: Most definitely. Our research as well as others shows that families and formal caregivers greatly benefit from learning skills to manage functional decline and behavioral symptoms, and strategies such as problem solving, and how to simplify everyday activities, communications and the environment. Caregivers need both information and skills that address the specific challenges that each dementia stage presents. For each care challenge, we help caregivers identify potential contributory factors associated with the person, caregiver and physical environment and then how to modify them to address the care issue.
GE: What do you want caregivers to know based on the research you have done?
LG: There is always something that can be done to make life better for both the person with dementia and the providers of care.
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