The results of this controlled pilot study suggest positive benefits and very large symptom reductions as demonstrated by the effect size for patient and caregiver outcomes. As to behaviors, the main outcome, treatment gains were found for the most frequently occurring behaviors (shadowing, repetitive questioning) and for agitation and argumentative behaviors, which research suggests trigger nursing home placement. Additionally, life quality improvements were found such that caregivers reported enhanced ability of their relative to derive pleasure and engage in activities. We did not find that TAP minimized depressed mood in dementia patients, although the change was in the expected direction.
As to caregivers, study findings suggest that TAP significantly reduced objective burden as measured by the amount of time spent in hands-on care, supervision or oversight, although associated subjective appraisals of burden and upset were not affected. This suggests that an intervention which specifically targets subjective appraisals may be desirable to complement the TAP program. However, other important benefits included skill enhancement, mastery, and self-efficacy using activities. Although we did not reduce caregiver depressive symptoms, caregivers reporting depressive symptoms and those who did not at baseline, benefited similarly from TAP. Thus, although the intervention was behaviorally demanding, even distressed caregivers were able to participate and benefit.
Of importance, TAP required 25 hours of interventionist training, and was implemented as intended. It was well tolerated by patients and caregivers alike as suggested by high interventionist ratings of receptivity and enactment. While interventionist ratings are potentially biased, low attrition and high average session participation rates indicate otherwise.
Why does engagement in activities tailored to cognitive capacity and interests of dementia patients result in symptom reduction? One explanation may be that activities fill a void, enhance role identity, and help dementia patients express themselves positively. (36
) This may afford control over self-identity, a critical attribute of selfhood that may endure throughout the disease process. (37
) The intervention introduced activities that preserved previous roles and identities of individuals (preparing simple meals for homemakers, or craft involvement). Life-long activities were modified by simplifying them to match patient abilities, thereby minimizing frustration and affording positive engagement. The facilitation of self-actualization was illustrated by some patients’ remembering interventionists between sessions that occur weeks apart, creating craft objects for holiday gifts, or expressing a wish to frame the placemat made during the assessment.
Another explanation may be that the intervention reduces allostatic load, defined as overload of sensory and information processing capacity. (38
) Recent conceptualizations of behaviors as reflecting the interplay between neurological, social-psychological and environmental factors suggest that external conditions may overload patients’ abilities, which may result in negative consequences. (16
) Simplifying the task and the environmental context in which activity occurs, hence “tailoring” activity, may reduce physiological stress responses and agitated-type behaviors.
Caregivers may benefit from TAP in several ways. A significant concern of families is how to occupy their relatives and support self-identity. Caregivers are particularly distressed by their relatives’ apathy and distress. (5
). TAP offered activities that provided pleasure, and caregivers observed immediate benefits. Moreover, the assessments provided caregivers with an understanding of the patient’s capacity for making decisions about safety. Finally, caregivers found that activities were pleasurable and easy to implement, and rather than requiring additional time, reduced time in daily care.
Important clinical implications can be derived. The TAP assessment combined neuropsychological testing and performance observations to obtain an understanding of capacity and deficits. Families often under- or over-estimate patient abilities and may benefit from the TAP assessment itself. One recommendation may be for referral to an occupational therapist trained in the TAP assessment to augment neuropsychological testing to inform families of patient capacities. Second, because this program preserves functionality by reducing behavioral disturbances, TAP may be reimbursable under Medicare guidelines and thus a plausible disease management strategy.
In summary, this study provides compelling evidence that a tailored approach that taps residual abilities and previous roles and habits improves life quality in dementia patients. This study identifies a process for customizing activities to abilities and training families in use of activities in daily care. Teaching caregivers activity use has added value by reducing their objective burden and enhancing skills. Given that pilot studies tend to yield large effect sizes (42
), and that the control group did not evince benefit in all areas as the experimental group after treatment receipt, it is important to test TAP on a larger scale, validate it with diverse dyads, and examine the underlying physiological mechanisms by which symptom reduction occurs.