Patricia E. Noonan

The Experience of High Levels of Grief in Caregivers of Persons with Alzheimer's Disease and Related Dementia

An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to describe the lived experience of 44 spouses and adult children who are caregivers of persons with Alzheimers disease and related dementias (ADRD) and scored high on the Marwit and Meuser Caregiver Grief Inventory, Short Form (MM-CGI-SF). This study presents qualitative results from a mixed-methods descriptive study (N = 201). Seven themes emerged from the qualitative data that detailed the caregiving experience of the individuals with high grief: (a) yearning for the past, (b) regret and guilt, (c) isolation, (d) restricted freedom, (e) life stressors, (f) systemic issues, and (g) coping strategies. The first 2 themes reflect grief reactions, whereas isolation, restricted freedom, life stressors, and systemic issues possessed elements of both grief and caregiver burden and stress. Coping strategies used by this group of caregivers included spiritual faith, social supports, and pets. Quantitative analysis confirmed that these themes are unique to individuals with high levels of grief compared with those with moderate/low levels of grief, except for the coping strategies of social support and spiritual faith. Caregivers with high levels of grief may benefit from supportive interventions that are based on reducing feelings of isolation, lack of freedom, and increased guilt and regret, while also addressing feelings of loss. Interventions that facilitate building a supportive network are suggested. Using a screening tool such as the MM-CGI-SF will help in identifying caregivers with high levels of grief who may be in need of additional support.

Effects of the Serial Trial Intervention on discomfort and behavior of nursing home residents with dementia.

This study tested the effectiveness of the Serial Trial Intervention (STI), an innovative clinical protocol for assessment and management of unmet needs in people with late-stage dementia. A double-blinded randomized experiment was conducted in 14 nursing homes with 114 subjects. The treatment group had significantly less discomfort than the control group at posttesting and more frequently had behavioral symptoms return to baseline. The group of nurses using the STI also showed more persistence in assessing and intervening than control group nurses did. There was a statistically significant difference between the groups in the use of pharmacological, but not nonpharmacological, comfort treatments. Results suggest that the STI is effective and that effective treatment of discomfort is possible for people with late-stage dementia.

The effects of hospice interventions on behaviors, discomfort, and physical complications of end stage dementia nursing home residents

This project was guided by the question—what is the effect of hospice-oriented care on discomfort, physiological complications, and behaviors associated with dementia for residents of long term care facilities with an end stage dementing illness? Convenience sampling from three long term care facilities was used and 62 residents completed the project. The intervention was implemented through a four pronged approach: • Interdisciplinary development of the intervention strategies for the new hospice households; • Development of the households; • Use of a hospice nurse as a case manager; and • Education of staff A pretest-posttest experimental design with random assignment to groups was used. Two months after the interventions were implemented, there was a statistically significant difference in discomfort levels between the treatment and control groups (t = 3.88, p < .001). Even though the treatment group showed lower scores on the tool that assessed behavior problems, the differences were not large enough to be statistically significant (t = 1.44, p = .155). There was no difference in the number of physical iatrogenic problems between the treatment and control groups (t = .054, p = .957). Staff reaction to the project was positive with staff reporting greater job satisfaction and empathy, and describing a variety of improvements in residents.

Comparison of the effectiveness of two protocols for treating nursing home residents with advanced dementia.

The Serial Trial Intervention (STI) is a decision support tool to address the problem of underassessment and undertreatment of pain and other unmet needs of people with dementia. This study compared the effectiveness of the 5-step and 9-step versions of the STI using a two-group repeated measures quasi-experimental design with randomization of 12 matched nursing homes. The sample consisted of 125 residents with moderate to severe dementia. Both the 5- and 9-step STIs significantly decreased discomfort and agitation from pre- to posttest (effect sizes = 0.45 to 0.90). The 9-step version was more effective for comorbid burden and increased cortisol slope (effect sizes = 0.50 and 0.49). Process variables were all statistically significantly improved using the 9-step STI. Nurse time was not different between the two groups. The clinical decision support rules embedded in the STI, particularly the 9-step version, helped nurses change practice and improved resident outcomes.

Using principles of diffusion of innovation to improve nursing home care.

Principles of diffusion of innovation were used to change care provided to people with dementia in 9 nursing homes. Use of these principles was associated with increased assessment in response to behavior change, increased administration of analgesics, and a significant decrease in resident behavioral symptoms. Results of this study support the emerging consensus that diffusion of innovation is an effective model for making changes in performance of healthcare organizations.