'Bare-bones' to 'silver linings': lessons on integrating a palliative approach to care in long-term care in Western Canada.

BACKGROUND: 'Whole-person' palliative approaches to care (PAC) are important for enhancing the quality of life of residents with life-limiting conditions in long-term care (LTC). This research is part of a larger, four province study, the 'SALTY (Seniors Adding Life to Years)' project to address quality of care in later life. A Quality Improvement (QI) project to integrate a PAC (PAC-QI) in LTC was implemented in Western Canada in four diverse facilities that varied in terms of ownership, leadership models, bed size and geography. Two palliative 'link nurses' were hired for 1 day a week at each site over a two-year time frame to facilitate a PAC and support education and training. This paper evaluates the challenges with embedding the PAC-QI into LTC, from the perspectives of the direct care, or front-line team members. Sixteen focus groups were undertaken with 80 front-line workers who were predominantly RNs/LPNs (n = 25), or Health Care Aides (HCAs; n = 32). A total of 23 other individuals from the ranks of dieticians, social workers, recreation and rehabilitation therapists and activity coordinators also participated. Each focus group was taped and transcribed and thematically analyzed by research team members to develop and consolidate the findings related to challenges with embedding the PAC. RESULTS: Thematic analyses revealed that front-line workers are deeply committed to providing high quality PAC, but face challenges related to longstanding conditions in LTC notably, staff shortages, and perceived lack of time for providing compassionate care. The environment is also characterized by diverse views on what a PAC is, and when it should be applied. Our research suggests that integrated, holistic and sustainable PAC depends upon access to adequate resources for education, training for front-line care workers, and supportive leadership. CONCLUSIONS: The urgent need for integrated PAC models in LTC has been accentuated by the current COVID-19 pandemic. Consequently, it is more imperative than ever before to move forwards with such models in order to promote quality of care and quality of life for residents and families, and to support job satisfaction for essential care workers.

Caregiver Experiences Across Three Neurodegenerative Diseases: Alzheimer's, Parkinson's, and Parkinson's With Dementia.

OBJECTIVE: This article asks whether distinct caregiver experiences of Alzheimer's disease (AD), Parkinson's disease (PD), and Parkinson's disease with dementia (PDD) spouses are accounted for by disease diagnosis or by a unique combination of symptoms, demands, support, and quality of life (QOL) cross disease groups. METHOD: One hundred five live-in spouse caregivers (71.4 ± 7 years) were surveyed for persons with AD (39%), PD (41%), and PDD (20%). A hierarchical cluster analysis organized caregivers across disease diagnosis into clusters with similar symptom presentation, care demands, support, and QoL. RESULTS: Four clusters cut across disease diagnosis. "Succeeding" cared for mild symptoms and had emotional support. "Coping" managed moderate stressors and utilized formal supports. "Getting by with support" and "Struggling" had the greatest stressors; available emotional support influenced whether burden/depression was moderate or severe. The results remain the same when diagnostic category is added to the cluster analysis. DISCUSSION: This study supports going beyond disease diagnosis when examining caregiver experiences.

Relationship and stage of dementia differences in caregiver perspectives on the meaning of activity.

Caregivers of persons living with dementia (PWD) taking cholinesterase inhibitors, who care 3 + h over three days/week, were interviewed. This study uses thematic content analysis to compare responses to the open-ended question " What do you believe getting involved in activities outside the home means for someone with dementia?" in spouse ( n = 613) and adult-children ( n = 260) caregivers, and across mild ( n = 314) and moderate-severe stages ( n = 280). For adult-children caregivers, activity participation promotes independence in their parents. Spouses describe activity in the context of their relationship with the PWD, and the experience is framed around their continued social roles as a couple. Mild-stage caregivers report the difficulty and negative outcomes (e.g. frustration, stigma) of engaging in activity, while moderate-severe caregivers discuss activity as preserving abilities in PWD and providing connection to cohort. This may indicate areas for improved activity provision and support for spouse (i.e. emotional) and adult-children (i.e. resources) caregivers across dementia stages.

Handgrip Strength Related to Long-Term Electromyography: Application for Assessing Functional Decline in Parkinson Disease.

OBJECTIVE: To determine which clinical measures of physical function (ie, gait, balance, and grip strength) best represent long-term electromyography in persons with Parkinson disease (PD) compared with those without PD. DESIGN: Cross-sectional study. SETTING: Local community. PARTICIPANTS: A sample (N=37) of men and women with PD (n=23) and those without PD (n=14), living independently at home, older than 50 years of age, from the local community. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Measures of gait, balance, and grip strength were completed, and electromyography was examined in biceps brachii, triceps brachii, vastus lateralis, and biceps femoris during a 6.5-hour day. Muscle activity was quantified through burst in electromyography (>2% of the normalized maximum voluntary exertion with a continuous activity period of >0.1s). Stepwise multiple regression models were used to determine the proportion of variance in burst characteristics explained by clinical measures of physical function in PD. RESULTS: Grip strength was the best predictor of muscle activity in persons with PD (R2=.17-.33; P<.04), whereas gait characteristics explained muscle activity in healthy controls (R2=.40-.82; P<.04). CONCLUSIONS: Grip strength could serve as an effective clinical assessment tool to determine changes in muscle activity, which is a precursor to functional loss in persons with PD.

Meaningful activity for persons with dementia: family caregiver perspectives.

Dementia threatens the capacity to engage in activity, suggesting meaningful activity may be helpful for persons with dementia (PWDs). This study explores the concept of meaningful activity, as defined by caregivers of PWDs. Family caregivers of PWDs, who provide 3 hours of care over 3 days/week, were interviewed after 6 months of cholinesterase inhibitors (ChEIs) therapy. Caregiver responses (N = 906) to the open-ended question What do you believe getting involved in activities outside the home means for someone with dementia are assessed. The themes are analyzed in terms of content, frequency, co-occurrence, and dementia severity. Caregivers emphasize the benefits of social connectedness, physical health, and mental stimulation. Activity is also viewed as respite, difficult, and has no meaning for care recipient. The implications of activity for self- and social-identity in PWD and caregiver are discussed. The benefits of activity varied by stage of disease. This knowledge indicates areas for improved activity provision and health care support.

Daily electromyography in females with Parkinson's disease: a potential indicator of frailty.

Females with Parkinson's disease (PD) are at increased risk for frailty, yet are often excluded from frailty studies. Daily electromyography (EMG) recordings of muscle activity can dissociate stages of frailty and indicate functional decline in non-neurological conditions. The purpose of this investigation was to determine whether muscle activity can be used to identify frailty phenotypes in females with PD. EMG during a typical 6.5-h day was examined in biceps brachii, triceps brachii, vastus lateralis and biceps femoris on less-affected PD side. Muscle activity was quantified through burst (>2% maximum exertion, >0.1s) and gap characteristics (<1% maximum exertion, >0.1s). Differences across frailty phenotype (nonfrail, prefrail, frail) and muscle (biceps brachii, BB; triceps brachii, TB; vastus lateralis, VL; biceps femoris, BF) were evaluated with a 2-way repeated measure ANOVA for each burst/gap characteristic. Thirteen right-handed females (mean=67 ± 8 years) were classified as nonfrail (n = 4), prefrail (n = 6), and frail (n = 3) according to the Cardiovascular Health Study frailty index (CHSfi). Frail females had 73% decreased gaps and 48% increased burst duration compared with nonfrail. Decreased gaps may be interpreted as reduced muscle recovery time, which may result in earlier onset fatigue and eventually culminating in frailty. Longer burst durations suggest more muscle activity is required to initiate movement leading to slower movement time in frail females with PD. This is the first study to use EMG to dissociate frailty phenotypes in females with PD during routine daily activities and provides insight into how PD-associated motor declines contributes to frailty and functional decline.

Parkinson's disease and sex-related differences in electromyography during daily life.

SCOPE: Daily bilateral electromyography (EMG) recordings reveal muscle activation patterns implicated in asymmetric Parkinson's disease (PD)-related functional decline. Also, daily EMG recordings reveal sex-differences in muscle activity that give rise to unique PD presentation in males and females. PURPOSE: Quantify handgrip strength and daily muscle quiescence through analysis of gaps in the EMG signal in males and females with PD. Bilateral daily EMG was recorded and normalized to maximal voluntary exertions (MVE). EMG gap was defined as <1% amplitude of MVE for >0.1s and characterized as number, duration and time occupied by gaps. A dynamometer evaluated maximal grip-strength. Three-way repeated measures ANOVA examined differences in gap characteristics and strength. Gap duration was shorter (p=0.04) and occupied less time (p=0.02) in PD than controls. Females had fewer gaps with shorter duration (p=0.004), occupying less time (p=0.004) compared with males. Gaps were fewer (p=0.04) and occupied less time (p=0.01) on more-affected than less-affected side. PD was weaker than controls (p=0.04), females were weaker than males (p=0.00), and the more-affected PD side was weaker than less-affected (p=0.04). CONCLUSIONS: Quantification of muscle quiescence through gaps in the EMG signal recorded during daily life provides insight into mechanisms underlying differential change in functional performance in males and females with PD.

Physical Activity across Frailty Phenotypes in Females with Parkinson's Disease.

Females with Parkinson's disease (PD) are vulnerable to frailty. PD eventually leads to decreased physical activity, an indicator of frailty. We speculate PD results in frailty through reduced physical activity. Objective. Determine the contribution of physical activity on frailty in PD (n = 15, 65 ± 9 years) and non-PD (n = 15, 73 ± 14 years) females. Methods. Frailty phenotype (nonfrail/prefrail/frail) was categorized and 8 hours of physical activity was measured using accelerometer, global positioning system, and self-report. Two-way ANCOVA (age as covariate) was used to compare physical activity between disease and frailty phenotypes. Spearman correlation assessed relationships, and linear regression determined associations with frailty. Results. Nonfrail recorded more physical activity (intensity, counts, self-report) compared with frail. Self-reported physical activity was greater in PD than non-PD. In non-PD, step counts, light physical activity time, sedentary time, and self-reported physical activity were related to frailty (R = 0.91). In PD, only carbidopa-levodopa dose was related to frailty (r = 0.61). Conclusion. Physical activity influences frailty in females without PD. In PD females, disease management may be a better indicator of frailty than physical activity. Further investigation into how PD associated factors contribute to frailty is warranted.

Factors related to functional independence in females with Parkinson's disease: a systematic review.

Males and females may exhibit diverse expressions of Parkinson's disease (PD) as a result of biological and social differences. In general, a higher incidence of PD is found among males (RR=1.5) compared to females. However, rigidity, postural instability and levodopa-induced dyskinesia are more prevalent in females with PD. These fluctuations affect motor performance and impact functional ability. This systematic review suggests that there is minimal research literature with respect to females living with PD. Specifically, the influence of physical ability in females with PD is underemphasized, considering its contribution to functional daily living and quality of life. Three intervention and nine functional assessment studies met inclusion criteria (n=302; mean age=65.5±8.3 years, 44% female). Reports suggest that females with PD have different gait patterns compared to 'healthy' age-matched females and males with PD. Females with PD experience increased freezing of gait as compared to males with PD. Dynamic balance was reduced in females compared to males with PD. Differences in cardiorespiratory fitness compared to healthy age-matched females was inconclusive. Studies were rated to be of moderate quality (20±5.4/32) and future studies should focus on improving sex-matched recruitment, randomized group allocation, and blinding of evaluators to ensure unbiased results. Regardless, the specific impact of PD on females warrants further investigation.

The effectiveness of exercise interventions for the management of frailty: a systematic review.

This systematic review examines the effectiveness of current exercise interventions for the management of frailty. Eight electronic databases were searched for randomized controlled trials that identified their participants as "frail" either in the title, abstract, and/or text and included exercise as an independent component of the intervention. Three of the 47 included studies utilized a validated definition of frailty to categorize participants. Emerging evidence suggests that exercise has a positive impact on some physical determinants and on all functional ability outcomes reported in this systematic review. Exercise programs that optimize the health of frail older adults seem to be different from those recommended for healthy older adults. There was a paucity of evidence to characterize the most beneficial exercise program for this population. However, multicomponent training interventions, of long duration (≥5 months), performed three times per week, for 30-45 minutes per session, generally had superior outcomes than other exercise programs. In conclusion, structured exercise training seems to have a positive impact on frail older adults and may be used for the management of frailty.

Does yoga engender fitness in older adults? A critical review.

Interest in yoga is growing, especially among older adults. This review critically summarizes the current literature to investigate whether physical fitness and function benefits are engendered through the practice of yoga in older adults. A comprehensive search yielded 507 studies; 10 studies with 544 participants (69.6 ± 6.3 yr, 71% female) were included. Large variability in yoga styles and measurement outcomes make it challenging to interpret results across studies. Studies reported moderate improvements for gait (ES = 0.54, 0.80), balance (ES = 0.25-1.61), upper/lower body flexibility (ES = 0.25, 0.70), lower body strength (ES = 0.51), and weight loss (ES = 0.73, 0.99).Yoga may engender improvements in some components of fitness in older adults. However, more evidence is needed to determine its effectiveness as an alternative exercise to promote fitness in older adults. Further investigation into yoga as an exercise activity for older adults is warranted.

An exploration of the burden experienced by spousal caregivers of individuals with Parkinson's disease.

Although previous research has attempted to identify the needs of caregivers for individuals with Parkinson's disease (PD), most has focused on the demands associated with the physical needs of the patient, and not on "mental burden." This study used the repertory grid method to capture the full range of caregivers' subjective experience, quantify their perceptions, and to acquire information that might be useful in directing remediation attempts. Within this sample, caregivers reported far greater burden from "mental stress" (e.g., worrying about individual's safety) than from "physical stress" (e.g., lifting individual into bed). Specifically, caregivers were primarily concerned about spousal safety, as this requires continuous vigilance and constant worry. Caregivers also reported experiencing "little deaths" as the disease progresses, related to a loss of independence for the couple, and the steady diminishment of social networks. Increasing attention on the mental burden experienced by spousal caregivers promises to increase quality of care, and quality of life for individuals with PD, by improving quality of life for the caregiver.