Mechanism of Action for Nonpharmacological Therapies for Individuals With Dementia: Implications for Practice and Research.

The current review addresses the need for increased use of evidence-based, nonpharmacological therapies for individuals with dementia. To facilitate understanding of the potential efficacy of nonpharmacological therapies on cognitive functioning for individuals with dementia, the mechanisms of action for selected therapies are described, including the assessment method used to identify the mechanism. The strength of evidence supporting each therapy was evaluated, with some therapies demonstrating strong support and others only moderate support for their effectiveness and mechanism of action. Therapies with the strongest support include (a) cognitive training/stimulation, (b) physical exercise, and (c) music. Therapies with moderate support include (a) biofield, (b) meditation, (c) engagement with a naturally restorative environment, and (d) social engagement. Although the strength of evidence varies, together these therapies offer treatments designed to improve cognitive functioning, have low risks and adverse effects, and have the potential for widespread accessibility, thereby increasing the potential range of therapies for individuals with dementia.

The effects of perceived stigma on quality of life outcomes in persons with early-stage dementia: Longitudinal findings: Part 2.

This article is the second report from a study examining perceived stigma in persons with dementia with findings regarding the association between stigma and quality of life outcomes being reported here. Fifty persons with dementia and 47 family caregivers were sampled, with data being collected at baseline and six, 12, and 18 months. The modified Stigma Impact Scale measured perceived stigma. Quality of life outcomes included: depression, anxiety, behavioral symptoms, personal control, physical health, self-esteem, social support, and activity participation. Linear mixed model or generalized linear mixed model (for depression) analyses revealed that some aspect of perceived stigma was associated with each outcome. Social rejection was associated with anxiety, behavioral symptoms, health, and activity participation. Internalized shame was associated with anxiety, personal control, health, self-esteem, social support understanding and assistance, and activity participation. Finally, social isolation was associated with depression, anxiety, personal control, health, self-esteem, social support understanding, and activity participation. The complexity of relationships between perceived stigma and quality of life outcomes is evident from these findings.

Perceived stigma in persons with early-stage dementia: Longitudinal findings: Part 1.

This longitudinal study examined perceived stigma in persons with dementia, with 50 persons with dementia, and 47 corresponding family caregivers. Data were collected at baseline and at 6, 12, and 18 months. Study results are reported in two parts, with findings regarding the stability of perceived stigma, measured using the modified Stigma Impact Scale, and relationship of stigma to person-centered variables being reported here. Findings included stability in perceived stigma, which did not show a downward trend until 18 months. Significant differences at baseline were found only for geographic location (rural vs. urban) with persons living in urban areas having higher levels of Stigma Impact Scale internalized shame compared to rural counterparts. Cognitive functioning was significantly, positively related to the Stigma Impact Scale social rejection and social isolation subscales. Findings support the enduring nature of perceived stigma over the early disease stages and the relationship of perceived stigma to some person-centered characteristics.

Conducting research with end-of-life populations: overcoming recruitment challenges when working with clinical agencies.

Conducting end-of-life (EOL) research can present numerous challenges associated with recruitment and retention of research subjects. Such issues may result from working with a variety of clinical settings or the uniqueness of the patient population. The purposes of this article were to describe recruitment challenges in EOL research when collaborating with different types of clinical agencies and to discuss strategies that are being used to overcome these recruitment issues.

Model for the First NIH-funded Center of Excellence in End-of-Life Research.

Centers of excellence are widely acknowledged as a mechanism to promote scientific advances in a particular field of science, but until recently there have been no end-of-life or palliative care research centers funded by the National Institutes of Health (NIH). The purpose of this article is to describe aims, framework, and organizational structure of the first NIH-funded Center of Excellence on end-of-life research, the Center for End-of-Life Transition Research (CEoLTR), and the advances in end-of-life research that the CEoLTR will facilitate. The teams of researchers involved in the CEoLTR have grown impressively since it was funded in 2007. Collectively, the teams are on target to accomplish all of the original goals for this five year award.

A combined, multimodal intervention for individuals with dementia.

Few studies have tested the effects of nonpharmacological interventions designed for people in early-stage dementia on the family caregiver. This study tested a multimodal intervention (Taiji exercise and support group) for people with dementia, with some treatment group caregivers choosing to co-participate. Control group caregivers participated in educational programs. Outcome measures included role stress (Relatives Stress Scale [RSS]) and quality of the relationship with the person with dementia. Trends toward positive effects for participating caregivers were found for overall role stress and the Personal Distress subscale and quality of the relationship with the person with dementia. In comparing outcomes between the total treatment group and the control group, treatment group caregivers rated one RSS subscale, Negative Feelings toward the Care Recipient, significantly lower (more positive) than control group caregivers. A within-group difference was found for the quality of the relationship for control group caregivers (increased negativity), with no increase in treatment group caregivers. Findings support the potential benefits of the intervention for both participating and nonparticipating caregivers.

The effects of a multimodal intervention on outcomes of persons with early-stage dementia.

Theories supporting the existence of a use-dependent neuroplasticity in the older brain were used to guide this pilot study. A repeated-measures randomized design was used to test the effectiveness of a multimodal (Taiji exercises, cognitive-behavioral therapies, support group) intervention on cognitive functioning, physical functioning, and behavioral outcomes in persons with dementia. The treatment group (n = 24 persons with dementia) participated in a 40-week intervention, with outcomes assessed at 20 and 40 weeks to assess optimal treatment length. Control group subjects (n = 19 persons with dementia) received attention-control educational programs. At 20 weeks, differences between groups were found for mental ability and self-esteem, with gains in balance being evident. Also, stability in depression and physical health were evident at 20 and 40 weeks for treatment group subjects. Continued improvement in outcomes was not observed at 40 weeks. However, findings support further testing of the intervention along with potential for achieving positive outcomes in early-stage dementia.

Measurement and relevance of personality characteristics in persons with dementia: a longitudinal perspective.

Studies of personality and outcomes in persons with dementia (PWD) have focused primarily on disease stages or change from premorbid personality following diagnosis. Data from a longitudinal study of 96 caregiver/PWD dyads was used to evaluate psychometric properties of two personality measures: one rated by proxies, the other by PWD. Proxy ratings indicate change in strength of personality traits across disease stages; self-ratings were stable, excepting decreased extroversion. Items detracting from reliability of some subscales reflected disease-related changes in PWD rather than true shifts in personality. Findings support importance of collecting both proxy and self-ratings of personality, examining individual items contributing to low reliability, and evaluating change in personality within the context of expected changes inherent in dementia.

Interventions for persons with irreversible dementia.

This chapter provides an overview and critique of the theoretical and research literature by nurse researchers and researchers in other disciplines regarding interventions for persons with dementia (PWD). Reports were included if published in English between 1990 and 2000 and if a descriptive, correlational, longitudinal, or intervention design was used. Case studies and narrative descriptions were not included. No specific age criteria for study participants were applied; however, PWD are generally over age 55. The theoretical literature and various disease stages were reviewed, including clinical and behavioral indicators for disease progression. Using a variety of approaches to survey the extant literature (review of computer databases, contacts with experts in the field, ancestry method, and manual searches of key gerontology journals), over 1,200 citations were initially reviewed, allowing for approximately 375 publications undergoing thorough analysis with 157 research publications being included in this synthesis. Key findings include the identification of well-supported cognitive-behavioral interventions to enhance cognitive functioning and memory, and to relieve depression in the early disease stages; multiple environmental and behavioral approaches for improvement in functioning, maintenance of activities, and alleviation of behavioral symptoms in the middle disease stages; and behavioral, interactive, and staff support and education interventions for adequate nutritional intake, urinary incontinence, and management of problematic vocalizations and other behavioral symptoms in the later disease stages. Recommendations for future studies include the need for development of operational definitions of behavioral symptoms, inclusion of the perspective of PWD, evaluation of long-term outcomes, adequate sample size, community rather than institutional-based studies, and increased intervention testing at various stages of the disease.

Predictors of emotional distress, general health, and caregiving outcomes in family caregivers of stroke survivors.

Predictors of emotional distress, general health, and stroke-related caregiving outcomes were determined in 104 family caregivers of stroke survivors based on a conceptual model derived from Lazarus' theory of stress and coping. Predictors of emotional distress (R(2) =.48, p <.001) were low caregiver self-esteem, high task difficulty, and high threat appraisal. Predictors of poorer health (R(2) =.25, p <.001) were not living with the patient, low household income, and high threat appraisal. Predictors of poor stroke-related care-giving outcomes (R(2) =.45, p <.001) were emotional distress, low benefit appraisal, high task difficulty, and high threat appraisal. Findings suggest potential areas for multidimensional caregiver interventions.