Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review

Background: Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative’s care and experience high level of strain at the end of life. Aim: To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice. Design: Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach. Data sources: Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied. Results: In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers’ preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life. Conclusion: The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided.

Opioids in the Elderly Patients with Cognitive Impairment: A Narrative Review

Background: Assessment and management of pain in elderly people with cognitive impairment is particularly challenging. Physiological changes due to aging as well as comorbidities and polypharmacy are responsible for a complex clinical approach. Concomitantly, in cognitive impairment, including advanced dementia, changes in central nervous system along with changes in the peripheral nervous system due to aging have a significant impact in pain perception. Often clinicians decide to prescribe opioids in order to relief pain, also without a clear indication. Aim: This review aims to investigate the effect of opioids in elderly patients with cognitive impairment. Methods: A literature search of PubMed/Medline, Scopus, and Cochrane databases was conducted using keyword searches to generate lists of articles which were screened for relevance by title and abstract to give a final list of articles for full-text review. Further articles were identified by snowballing from the reference lists of the full-text articles. Results: This review discuss the complex physiological and pharmacological changes in elderly as well as the neurological changes that affect pain perception in this population. Additionally, it focuses on cognitive impairment and pain in Alzheimer’s disease and other dementias, the pain assessment in the elderly with cognitive impairment as well as the safety of opioid use in elderly. Information regarding opioid prescription in nursing homes as well as recorded indications for opioids use, type and dosing of opioid and compliance of treatment in advanced dementia are also provided. Conclusions: Opioid prescription in elderly population with cognitive impairment is particularly complex. All healthcare professionals involved in the care of such patients, need to be aware of the challenges and strive to ensure analgesic use is guided by appropriate and accurate pain assessment.

Evaluating Residual Cognition in Advanced Cognitive Impairment: The Residual Cognition Assessment

<b><i>Background:</i></b> In nursing homes, most of the patients with dementia are affected by severe cognitive disorder. Care interventions follow an accurate and recurring multidimensional assessment, including cognitive status. There is still a need to develop new performance-based scales for moderate-to-advanced dementia. <b><i>Objectives:</i></b> The development of the Residual Cognition Assessment (RCA) responds to the need to create new scales for global cognitive screening in advanced dementia, with some peculiar features: performance based, brief (&#x3c;5 m), available without specific training, and suitable for nonverbal patients with minimal distress. <b><i>Methods:</i></b> Two raters have administered the RCA and the Severe Impairment Battery-short version (SIB-S) to 84 participants with MMSE = 0. After 2–3 weeks, the same sample has been retested. The RCA has been also administered to 40 participants with MMSE 1–10 for a comparison. <b><i>Results:</i></b> The RCA has exhibited excellent values for test-retest reliability (intraclass correlation [ICC] = 0.956) as well as for inter-rater reliability (ICC = 0.997). The concurrent validity analyzes have shown strong correlations between the RCA and the SIB-S with ρ = 0.807 (<i>p</i> &#x3c; 0.01), and the RCA and the Clinical Dementia Rating (CDR) with ρ = −0.663 (<i>p</i> &#x3c; 0.01). Moderate correlation has been found between the RCA and the Functional Assessment Staging Scale with ρ = −0.435 (<i>p</i> &#x3c; 0.01). The instrument has showed high internal reliability, too (total: <i>α</i> = 0.899). The RCA has low floor effect (2%) with respect to the SIB-S (58%) but shows ceiling effect in the MMSE 1–10 sample (50%). The ROC curve analyses demonstrate that the RCA is acceptably able to discriminate between subjects with CDR 4/5 with an AUC of 0.92. Exploratory factor analysis shows 3 factors, defined as three major degrees of cognitive performance in advanced dementia, indeed hierarchically structured in three possible levels of decline. <b><i>Conclusions:</i></b> The RCA has showed excellent validity and reliability as well as good sensitivity to identify advanced cognitive impairment in dementia, without floor effect. The RCA seems complementary to the MMSE, so advisable when the latter reaches 0. Administration and scoring are simple, and only few minutes are required to assess the patient. The RCA can discriminate at least 3 different major stages in advanced dementias: severe, profound, and late.

Invariance of the PAINAD Scale Between the Black and White Residents Living With Dementia

The purpose of this study was to test the reliability and validity of the Pain Assessment in Advanced Dementia (PAINAD) and particularly consider whether or not this measure was invariant when used among the Black and White residents. Baseline data from an implementation study testing that included a sample of 553 residents, 30% of who were Black, from 55 nursing were included in this study. The Winsteps statistical program was used to perform the Rasch analysis and evaluate the reliability and validity of the measure based on internal consistency, infit and outfit statistics, mapping, and a differential item functioning (DIF) analysis. The AMOS statistical program was used for confirmatory factor analysis. The findings supported the reliability and validity of the PAINAD when used with these individuals and demonstrated that there was no evidence of invariance between the Black and White residents. All the items fit the model, but there was not a good spread of the items across the pain level of the participants. The majority of the participants (75%) were so low in pain signs or symptoms that they could not be differentiated. Based on the clinical practice and observations, it is recommended that additional items can be added to the measure such as observing the individual for evidence of resisting care, retropulsion when trying to stand, hitting or kicking when turning in bed, hitting or kicking when transferring from bed to chair, hitting or kicking when ambulating, or hitting or kicking when raising arms, less engagement with others, and decreased participation in the activities previously enjoyed.

Physical interventions for people with more advanced dementia – a scoping review

Background Dementia is a neuro-degenerative condition resulting in cognitive and physical decline over time. In the early stages of the condition, physical decline may be slow, but in the later stages, it may become more pronounced. Physical interventions may be employed to try and reduce the physical decline that people experience, yet it is unclear what interventions may be effective. The aim of this study was to explore the breadth and quantity of evidence that exists in relation to the delivery of physical interventions for people with advanced dementia. Methods We undertook a scoping review in order to map the current literature. All types of study design were included in the search in order to gain a comprehensive scope of the literature. We searched a variety of databases from inception until March 2021, focusing on physical interventions. Double screening and data extraction were employed in order to increase the reliability of the results. Results Our review found four studies which focused on physical interventions aimed at improving physical outcomes for people with more advanced dementia. The majority of studies were excluded as their interventions were not specific to people with advanced dementia. The studies that were included incorporated functional activities and, despite small sample sizes, suggested statistically significant improvements in outcomes for people with advanced dementia. Conclusion There is currently limited evidence relating to physical rehabilitation interventions for people with more advanced dementia, however, the evidence we presented suggests potential benefits for physical outcomes. Future research should focus on robust research to determine the most effective and cost-effective interventions that meet the needs of this population.

Perspectives Toward Person-Centered Long-Term Care in China

Health care aides provide direct care for older residents with advanced dementia in long-term care facilities. This study aims to understand care aides’ perceptions of what is ‘good’ care, what is person-centered care, and how to provide person-centered care for older residents with advanced dementia, as preparatory work of the WE-THRIVE consortium’s efforts to develop internationally-relevant common data elements of person-centered dementia care and launch comparative research in LMICs. Semi-structured interviews were conducted with health care aides (N=35) from 2 government-owned and 2 private long-term care facilities in urban China. Directed and conventional content analysis were used, drawing upon core constructs of person-centered dementia care and Nolan’s (2006) senses framework. We found that although care aides were not trained in person-centered care, they did incorporate person-centeredness in their work by tailoring their care to the needs of older residents and facilitating interactions with residents and their peers through communication cues.

Impact of Race on Decision Making for Nursing Home Residents With Advanced Dementia: Can We Disrupt and Transform?

Despite 20 years of research and numerous experts and associations advocating a palliative approach to care for nursing home (NH) residents with advanced dementia, research consistently demonstrate striking and persistent racial differences in the use of burdensome interventions such as feeding tubes and hospital transfer. Most notable is that Black NH residents experience more burdensome interventions at the end of life. The reasons for these differences are poorly understood. The purpose of this study was to examine NH staff members’ perceptions of advance care planning with proxies of Black and White residents. We conducted thematic analysis of semi-structured interviews with 158 NH staff members gathered as part of the ADVANCE study. This is a large qualitative study in 13 NHs in 4 regions of the country aimed at explaining regional and racial factors influencing feeding tube and hospital transfer rates. We found that NH staff, regardless of region of the country, held several assumptions about Black proxies including: being attached or not wanting to let go; not wanting to talk about death, believing everything must be done; not wanting to play God; having large conflicted families, not trusting; putting on attitude, and tending not to use NHs. We found that these assumptions led some NH staff to feel that rather than engaging in shared decision making, they were engaged in a battle with proxies leading them to pick and choose their battles and at times even giving up trying. Whether these assumptions can be disrupted and transformed will be discussed.