Cherie Simpson

Pilot study of a brief behavioral sleep intervention for caregivers of individuals with dementia.

Informal caregivers of individuals with dementia experience higher rates of poor sleep quality and depression than the general population. Short-term behavioral interventions have been shown to improve sleep quality in other caregiver populations. The purposes of this study were to determine the feasibility of the CAregiver Sleep Intervention (CASI) in a small sample of caregivers of both community-dwelling and institutionalized individuals with dementia. The caregivers were given CASI, a 5-week behavioral sleep intervention combining relaxation, stimulus control, and sleep hygiene with personal goal setting, delivered at the caregivers convenience. Caregivers reported no increased burden with CASI. The intervention was well received, and sleep quality and depression trended toward improvement. CASI appears to be feasible and beneficial in this small sample and warrants further study in caregivers of individuals with dementia.

Decision-making capacity and informed consent to participate in research by cognitively impaired individuals

Obtaining informed consent is a fundamental part of conducting research that balances the need for participant autonomy and calls on the principal investigator to exercise beneficence. This is especially true in research involving persons with dementia and mild cognitive impairment where the ability to understand and reason may be compromised. Performing an assessment of decision-making capacity to consent to research should be the first step in helping the researcher decide who signs the consent. This article reviews the current literature available on instrumentation and procedures for capacity assessment, and in the absence of universal guidelines offers implications and suggestions for practice.

Emotion work in family caregiving for persons with dementia.

Emotion work enhances emotional well-being and emotional support in relationships between two people. Emotion work is a part of family work but has not been described in the context of caring for a family member with dementia. Content analysis applied to 11 interviews of informal caregivers describing their interactions with a person with dementia resulted in four categories of emotion work: (1) managing feelings, (2) weighing options, (3) being parental, and (4) ensuring emotional well-being. Caregivers performed emotion work to meet the feeling rules of being a good caregiver, but often with emotional dissonance between the caregivers’ true feelings.

Dementia caregivers' lived experience of sleep.

Purpose: Poor sleep quality leads to sleep deficiency, an unmet public health problem that is especially acute in caregivers. The purpose of this study was to investigate the dementia caregiver’s lived experience of sleep. The specific objectives were to (1) explore causes for poor sleep as identified by the caregiver, (2) gain knowledge about how the caregiver manages the sleep experience, and (3) gain an understanding of how caregivers perceive health promotion suggestions to improve sleep quality. Methods: This was a qualitative study using a phenomenological framework. In 3 focus groups, data were collected from 15 informal/family member caregivers of a person with dementia (PWD). Results: Three themes were identified in caregivers’ descriptions of disruptions to their sleep quality: sleep quality fluctuating with the status of the PWD, a need for vigilance to safeguard the PWD at night, and worry about current and future events, which caused rumination. Caregivers did not receive formal help from healthcare providers but did participate in activities that promote good sleep. Caregivers identified barriers to health promotion activities, including lack of time, decreased energy, and additional costs for providing care for the PWD. Conclusion: This research provides exemplars of caregivers’ thoughts, preferences, values, and beliefs regarding their sleep experience in the context of caregiving. The caregiver’s perspective should be taken into consideration when clinical nurse specialists provide evidence-based care. Clinical implications are provided.

In a Longevity Society, Loss and Grief Are Emerging Risk Factors for Health Care Use: Findings From the Health and Retirement Survey Cohort Aged 50 to 70 Years

In a society of long lives, parent and child life can overlap by as much as 50 years. Most children now experience the death of their parents as adults. Many of the 2.5 million deaths each year in the United States are parents. Parental loss is a risk factor for subsequent illness. The Health and Retirement Survey is a representative cohort of persons aged 50 to 70 years. Using the 2010 cohort data, we estimate risk for use of health care after the death of a parent. Loss is a near universal experience in the cohort (87%). A report of any loss increases risk of health care utilization by 20% to 30%. For a longevity society, preventing loss-related hospitalization is a measurable outcome for bereavement care.

The impact of mid- and late-life loss on insomnia: findings from the health and retirement study, 2010 cohort

Bereavement and insomnia are both well-documented risk factors for illness. We use cohort data to estimate risk of insomnia after death of a family member among adults aged 50 to 70 years. Each day, 6700 persons die in the United States. During the next 20 years, this number will increase. In this cohort, any loss increases the likelihood of insomnia. The highest rates of insomnia occur among women aged 50 to 59 years; men aged 65 to 70 years, and persons reporting death of a spouse/partner or child. Physical activity reduces this risk by one-third. Bereavement is a public health issue requiring a targeted response.