A behavioral intervention for agitation of people with dementia living at home.

Of major concern in dementia is the challenging behavior that may accompany the
disease, like agitation, aggression, and apathy. The prevalence of challenging
behavior among non-institutionalized people with dementia is high, in the
Netherlands as in other countries. For example, agitation and irritability is
present in 30-40% of the people with dementia living in the community and
hyperactivity in 60% of the cases (de Vugt, 2004). the consequences of
agitation are often far-reaching: reduced quality of life of people with
dementia themselves, increased burden of the informal caregivers, and
acceleration of nursing home placement with a substantial impact on the already
high costs of long term care (Pot, 1996; de Vugt, 2004; Gaugler et al., 2009).

All current dementia guidelines (APA, IPA, NICE, CBO) recommend psychosocial
(or non-pharmacological) interventions as the preferred treatment for
challenging behavior. However, most psychosocial interventions are provided to
people with dementia who are already receiving daycare or who are placed in
Long Term Care Facilities, facilities with multi-disciplinary teams including a
psychologist. There are less psychosocial interventions for people with
dementia living in the community, cared for by an informal caregiver.
Furthermore, there is a lack of individualized interventions. Most psychosocial
interventions are not tailored to the needs, abilities and background of the
people with dementia. Ignorance of individual sources of variability by testing
an *one size fits all* intervention may be a reason for the ambiguous results
of studies on psychosocial interventions for people with dementia thus far (for
an overview Livingstone et al., 2005).

For the development of psychosocial interventions for people with dementia and
their caregivers, it is important to take the behavior of the people with
dementia and their caregivers as a starting point (de Lange, 2004; Pot, 2009b).
Challenging behavior of a specific person with dementia interacting with a
specific caregiver needs to be analyzed and an individualized plan to prevent
the challenging behavior need to be formulated. In addition, two approaches
described in the literature seem to be promising: Applied Behavioral Analysis
and the unmet needs model. The reason to chose for agitation rather than the
broad variety of challenging behavior is to simplify the behavioral analysis
because every behavior might have a broad spectrum of different causes.

The objective of this study is to develop an evidence-based individualized
intervention and to compare the effectiveness of this individualized approach
with care as usual to reduce or prevent the increase of agitation (frequency or
caregiver perceived disruptiveness) among people with dementia living at home
cared for by an informal caregiver.

Research questions that will be answered:

Effect evaluation
What is the impact of the intervention on the agitated behavior of the person
with dementia and the perceived disruptiveness of the behavior by the caregiver
over time?

Process evaluation
1. Which factors contribute to the feasibility and acceptability of the
intervention (a.o. characteristics dyad, competences case manager, advice from
the psychologist)?
2. How can the intervention be adjusted to enhance the acceptability and
feasibility?
3. What is the usual care when agitated behavior occurs in a person with
dementia living at home with his caregiver?

The study proposed is a process- and effect evaluation with an intervention
period of 15 weeks and four measurements for all caregivers: a pre- (T0), amid
(T1) post- (T2) and a follow-up measurement (T3) after 3 months. All the people
with dementia will receive three measurements: a pre- (T0) post- (T2) and
follow-up measurement (T3).

Before providing the intervention to all dyads, a small pilot study will be
carried out with 2-4 case managers of two dementia chains that participate in
the process- and effect evaluation. The objective of this small pilot study is
to establish the feasibility of the study and intervention.

The focus of the intervention will be the agitation of people with dementia
living in the community cared for by an informal caregiver. because the
intervention is tailor-made the goals and treatment plan is different for every
dyad. Not only reduction of the agitated behavior could be a goal of the
intervention, but also the acceptance of the perceived disruptiveness of the
agitation by the caregiver or the prevention of the increase of the agitation.
The treatment plan will be tailored to the person's past identity, preferences
and abilities. The intervention consists of a cycle of analyzing the behavior
of the person with dementia and formulating and evaluating a treatment program.

The case manager plays an important role in detecting the presence of
disruptive agitated behaviors. During a first home visit of the case manager
the agitation will be described in more precise terms of observable behavior
and the case manager and the dyad will decide which agitated behavior is the
focus of the intervention. The case manager will make a behavioral analysis of
the targeted agitated behavior. The analysis will give insight in starting
points for the treatment plan. To make a good analysis it is necessary to know
what happens in the situations the agitation occurs. Therefore the caregiver
will be asked to observe the situation with the help of standardized forms and
if necessary to give a precise description of the situation. It could be
difficult for the caregiver to put in words what happens, therefore the
caregiver will be given the opportunity to video-tape the situation (obvious,
only when the person with dementia agrees to it). The case manager and the
caregiver will discuss and look at the observations (second home visit). Next,
the case manager will analyze the agitated behavior. An Applied Behavioral
Analysis (ABA) will be used to determine how the agitation of the person with
dementia relates to the environment, with special attention to the interactions
with the caregiver. To identify the stimulus or stimuli (S) and the
characteristics of the person with dementia (O), special attention to the unmet
needs of the person with dementia will be paid. Based on this analysis a
individualized treatment plan will be formulated. When needed, the case manager
can contact the psychologist of the dementia chain for advice.
During the third home visit the case manager will discuss the concept analysis
and treatment plan with the informal caregiver and if possible also with the
person with dementia. A final analysis and plan to reduce the agitation will be
formulated together (consensus-based). The caregiver will bring the proposed
intervention into practice, the case manager will be in contact by phone every
two weeks to discuss the progress of the intervention.
During a fourth home visit the executed treatment plan will be evaluated. This
first cycle will take 7 weeks. The cycle can be repeated two times, and will
take a maximum of 8 weeks together. A cycle will start with evaluation of the
behavior, next the case manager and dyad will decide where the cycle will
start. A cycle can start at different points, such as continuing the treatment
plan, formulating a new treatment plan, setting new goals or changing the GAS,
making a new behavior analysis, making new video-recordings or description on
paper, the focus of the intervention is different or new agitated behavior
occurred.
When the agitation is reduced to a level that is acceptable for the dyads, the
home visits will stop. With the GAS the attainment of the goals will be
evaluated en registered.

The duration of the intervention period is 15 weeks and four measurements for
all caregivers: a pre- (T0), amid (T1) post- (T2) and a follow-up measurement
(T3) after 3 months. All the people with dementia will receive three
measurements: a pre- (T0) post- (T2) and follow-up measurement (T3). The
duration of these measurements are approximately 30 minutes. The intervention
consists of a maximum of 3 cycles. The first cycle will take 7 weeks, the
repetition of these cycles will take a maximum of 8 weeks together. The
duration of the home visits is approximately 30 to 60 minutes. When the
caregiver brings the treatment plan into practice, the case manager will be in
contact by phone every two weeks to discuss the progress of the intervention.
For each person with dementia participating in this study, a tailor-made
treatment will be formulated, with their strengths and limitations taken into
account.
We expect that the intervention will result in a reduction or prevention of
agitation among the people with dementia and that this will have positive
effects on the people with dementia as well as their caregivers. All this taken
into consideration we expect that the occurrence of risk to the dyads is small
and the expected burden will be in proportion to the potential value.