Effects of the Namaste Care Family programme on quality of life of nursing home residents with advanced dementia and on family caregiving experiences: study protocol of a cluster-randomised controlled trial.

INTRODUCTION: Quality of life of people with advanced dementia living in nursing homes is often suboptimal. Family caregivers can feel frustrated with limited contact with their relatives, which results in visits that are perceived as stressful and not very meaningful. Few psychosocial interventions are specifically developed for people with advanced dementia, and actively involve family caregivers or volunteers. Also, interventions usually stop when it becomes difficult for people to participate. The Namaste Care Family programme aims to increase the quality of life of people with advanced dementia, and improve family caregiving experiences through connecting to people and making them comfortable. METHODS AND ANALYSIS: Our study will evaluate the effects of the Namaste Care Family programme on quality of life of people with advanced dementia living in nursing homes and family caregiving experiences using a cluster-randomised controlled trial. Longitudinal analyses will be performed taking into account clustering at the nursing home level. Both a cost-effectiveness and a cost-utility analysis from a societal perspective will be performed. We will modify the Namaste Care Family programme to increase family and volunteer involvement in ongoing and end-of-life care. Data collection involves assessments by family caregivers, nursing staff and elderly care physicians using questionnaires, and observations by the researchers at baseline and multiple times over 12 months. The last questionnaire will be sent up to month 24 after the death of the person with dementia. During semistructured interviews, the feasibility, accessibility and sustainability of the Namaste Care Family programme will be assessed. ETHICS AND DISSEMINATION: The study protocol is approved by the Medical Ethics Review Committee of the VU University Medical Center in Amsterdam (protocol no. 2016.399) and registered with the Nederlands Trial Register (NTR5692). The findings will be disseminated via publications in peer-reviewed journals, conference presentations and presentations for healthcare professionals where appropriate. TRIAL REGISTRATION NUMBER: NTR5692.

The Namaste Care programme can reduce behavioural symptoms in care home residents with advanced dementia.

OBJECTIVE: The objective of the study was to evaluate the effects of the Namaste Care programme on the behavioural symptoms of residents with advanced dementia in care homes and their pain management. METHODS: Six dementia care homes collaborated in an action research study-one withdrew. Inclusion criteria were a dementia diagnosis and a Bedford Alzheimer's Nursing Severity Scale score of >16. Primary research measures were the Neuropsychiatric Inventory-Nursing Homes (NPI-NH) and Doloplus-2 behavioural pain assessment scale for the elderly. Measures were recorded at baseline and at three 1-2 monthly intervals after Namaste Care started. RESULTS: Management disruption occurred across all care homes. The severity of behavioural symptoms, pain and occupational disruptiveness (NPI-NH) decreased in four care homes. Increased severity of behavioural symptoms in one care home was probably related to poor pain management, reflected in increased pain scores, and disrupted leadership. Comparison of NPI-NH scores showed that severity of behavioural symptoms and occupational disruptiveness were significantly lower after initiation of Namaste Care (n = 34, p < 0.001) and after the second interval (n = 32, p < 0.001 and p = 0.003). However, comparison of these measures in the second and third intervals revealed that both were slightly increased in the third interval (n = 24, p < 0.001 and p = 0.001). CONCLUSIONS: Where there are strong leadership, adequate staffing, and good nursing and medical care, the Namaste Care programme can improve quality of life for people with advanced dementia in care homes by decreasing behavioural symptoms. Namaste is not a substitute for good clinical care.

The effect of dance on depressive symptoms in nursing home residents.

OBJECTIVE: To evaluate the effect of a dance-based therapy on depressive symptoms among institutionalized older adults. DESIGN: Randomized controlled trial. SETTING: Nursing homes. PARTICIPANTS: Older adults (60 years or older) permanently living in a nursing home. INTERVENTION: Exercise Dance for Seniors (EXDASE) Program designed for the use in long-term care settings performed once a week for 60 minutes for 3 months. MEASUREMENTS: Baseline measures included sociodemographic characteristics, ability to perform basic as well as instrumental activities of daily living, basic mobility, self-rated health, and cognitive status. Outcome measures were collected before and after the intervention and included assessment of depressive symptoms using the geriatric depression scale (GDS). RESULTS: Comparison of participants with MMSE of 15 or higher showed that GDS scores in the intervention group significantly improved (P = .005), whereas the control group had a trend of further worsening of depressive symptoms (P = .081). GLM analysis documented highly statistically significant effect of dance therapy (P = .001) that was not influenced by controlling for intake of antidepressants and nursing home location. Dance therapy may have decreased depressive symptoms even in participants with MMSE lower than 15 and resulted in more discontinuations and fewer prescriptions of antidepressants in the intervention group than in the control group. CONCLUSION: This study provides evidence that dance-based exercise can reduce the amount of depressive symptoms in nursing home residents. In general, this form of exercise seems to be very suitable and beneficial for this population.

Hospice access for individuals with dementia.

Involvement in a hospice program is important because it may allow individuals with dementia to delay or prevent institutionalization as well as provide psychosocial support for their families. Once used mostly by patients with a terminal cancer, now more than one half of the hospice patients have diagnoses other than cancer. Yet hospice is still underused for individuals dying with advanced dementia. We conducted a pilot study of hospice agencies to determine barriers and characteristics of dementia hospice enrollment. Using a mailed questionnaire and interview, we looked at demographics, accessibility, training, referral sources, and marketing. Our analysis divided the agencies based on dementia census and availability to non-Medicare eligible individuals. Results showed hospices having Bridge and Transition programs had on average 4 times higher Alzheimer's disease (AD) and dementia census than hospices without these programs. The highest rated barriers to hospice use for individuals with dementia were prognosis, education, and finance.

Management of constipation in residents with dementia: sorbitol effectiveness and cost.

OBJECTIVE: The objective of this report is to describe a cost-effective strategy for management of constipation in nursing home residents with dementia. DESIGN: We conducted a prospective observational quality improvement study of 41 residents with chronic constipation and receiving an osmotic laxative. Sorbitol was substituted for lactulose. SETTING: The study was conducted at a dementia special care unit at a Veterans Administration hospital. MEASUREMENT: We measured the number and amount of laxative use over a period of 4 weeks that were required to maintain regular bowel function. RESULTS: There was no difference in efficacy of lactulose and sorbitol. Use of additional laxatives was infrequent: Milk of Magnesia on approximately 10% of days/patient, bisacodyl suppository on 2% to 4% of days/patient, and Fleet enema only on 3 occasions. The cost of constipation management using routine administration of sorbitol and as-needed use of other laxatives was 27% to 55% lower than the cost of other constipation management strategies reported in the literature. CONCLUSION: Substitution of sorbitol for lactulose does not change efficacy of the treatment and decreases cost. Regular use of an osmotic laxative avoids the costs and discomforts of rectal laxatives.

Management of constipation in residents with dementia: sorbitol effectiveness and cost.

OBJECTIVE: The objective of this report is to describe a cost-effective strategy for management of constipation in nursing home residents with dementia. DESIGN: We conducted a prospective observational quality improvement study of 41 residents with chronic constipation and receiving an osmotic laxative. Sorbitol was substituted for lactulose. SETTING: The study was conducted at a dementia special care unit at a Veterans Administration hospital. MEASUREMENT: We measured the number and amount of laxative use over a period of 4 weeks that were required to maintain regular bowel function. RESULTS: There was no difference in efficacy of lactulose and sorbitol. Use of additional laxatives was infrequent: Milk of Magnesia on approximately 10% of days/patient, bisacodyl suppository on 2% to 4% of days/patient, and Fleet enema only on 3 occasions. The cost of constipation management using routine administration of sorbitol and as-needed use of other laxatives was 27% to 55% lower than the cost of other constipation management strategies reported in the literature. CONCLUSION: Substitution of sorbitol for lactulose does not change efficacy of the treatment and decreases cost. Regular use of an osmotic laxative avoids the costs and discomforts of rectal laxatives.

Development and psychometric evaluation of the Pain Assessment in Advanced Dementia (PAINAD) scale.

OBJECTIVES: To develop a clinically relevant and easy to use pain assessment tool for individuals with advanced dementia that has adequate psychometric properties. DESIGN: Instrument development study using expert clinicians and behavioral observation methods. Measurement of sensitivity of the instrument to detect the effects of analgesic medications in a quality improvement activity. SETTING: Inpatient dementia special care units in a Veterans Administration Medical Center. PARTICIPANTS: Nineteen residents with advanced dementia who were aphasic or lacked the ability to report their degree of pain and six professional staff members. Additionally, data from medical records of 25 residents who were receiving pain medications as required (PRN) were collected. MEASUREMENTS: Based on the literature review, related assessment tools and consultation with expert clinicians, a five-item observational tool with a range of 0 to 10 was developed. The tool, Pain Assessment in Advanced Dementia (PAINAD), was compared with the Discomfort Scale and two visual analog scales (discomfort and pain) by trained raters/expert clinicians in the development study, and used for detection of analgesic efficacy in a quality improvement activity. RESULTS: Adequate levels of interrater reliability were achieved between dyads of the principal investigator with each clinical research rater and between two raters. PAINAD had satisfactory reliability by internal consistency with a one factor solution. PAINADthe Discomfort Scale-Dementia of Alzheimer Type (DS-DAT) were significantly correlated, providing evidence of construct validity. PAINAD detected statistically significant difference between scores obtained before and after receiving a pain medication. CONCLUSIONS: The PAINAD is a simple, valid, and reliable instrument for measurement of pain in noncommunicative patients. Since the patient population used for its development and testing was limited to a relatively small number of males, further research is needed before it can be universally recommended.

Pitfalls in assessment of decision-making capacity.

A total of 395 consultation-liaison psychiatrists, geriatricians, and geriatric psychologists responded to a survey that asked them to rate the frequency and importance to clinical care of 23 potential pitfalls and misunderstandings by clinicians who refer patients for assessment of decision-making capacity. Respondents also indicated which pitfalls were the most important to address in educating health care professionals. Overall, 22 of 23 pitfalls were rated as common by more than half of the respondents. Thirty-six percent of the respondents indicated that the most important pitfall to address in educating health care professionals was the tendency for health care practitioners to assume that a patient who lacks capacity for one type of medical decision also lacks capacity for all medical decisions. The results suggest that additional education is needed to improve clinicians' ability to evaluate patients' decision-making capacity.

A pain assessment tool for people with advanced Alzheimer's and other progressive dementias.

Appropriate pain management can only be achieved through accurate pain assessment that is individualized, ongoing, and well documented. Assessment tools must focus on the patient as the authority on pain's existence and severity; however, self-reports are not feasible when patients lose their ability to verbally communicate. This article describes a scientifically proven pain assessment tool that can be used for patients with advanced dementia and Alzheimer's Disease.