Dementia In Long-term Care Homes Research Articles

Use of headphones for the delivery of music programs for people with dementia in long-term care homes: a scoping review protocol

IntroductionDementia affects the quality of life. Excessive noise in care environments can exacerbate stress and related symptoms. Headphone-based music interventions may help improve the quality of life for people with...

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life

AbstractBackgroundPatient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries.Research Design and ObjectiveAn interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention.FindingsThirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI.Discussion and ImplicationsInternational projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources.Patient or Public ContributionPPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

Connecting Today: Feasibility and acceptability of a remote visiting program for people living with dementia in long-term care homes.

Social isolation and loneliness affect the quality of life of people living with dementia, yet few interventions have been developed for this population. The purpose of this study was to assess the feasibility and acceptability of 'Connecting Today', a remote visiting program designed for use with care home residents living with dementia. This was a feasibility study to assess whether Connecting Today can be delivered in care homes, and was acceptable to family and friends and people living with dementia. We used a single-group before/after design and included residents ≥ 65 years old with a dementia diagnosis from two care homes in Alberta, Canada. Connecting Today involved up to 60min per week of facilitated remote visits for 6weeks. To understand feasibility, we assessed rates and reasons for non-enrollment, withdrawal and missing data. We assessed acceptability with the Observed Emotion Rating Scale (residents) and a Treatment Perception and Preferences Questionnaire (family and friends). Data were analyzed with descriptive statistics. Of 122 eligible residents, 19.7% (n = 24) enrolled (mean age = 87.9 years, 70.8% females). Three residents withdrew from the study before the first week of calls. Among 21 remaining residents, 62%-90% completed at least 1 call each week. All the calls were completed by videoconference, rather than by phone. Alertness and pleasure were observed for ≥92% of residents during calls. The 24 contacts rated Connecting Today as logical, effective and low risk. Facilitated, remote visits are feasible and highly acceptable to residents and their family and friend contacts. Connecting Today shows promise to address social isolation and loneliness for people living with moderate to severe dementia because it can promote positive engagement in meaningful interactions with their family and friends while they are living in a care home. Future studies will test effectiveness of Connecting Today in a large sample.

What will happen to my mom? A grounded theory on nurses' support of relatives' end-of-life decision-making process for residents living with dementia in long-term care homes.

BackgroundRelatives of an older person living in a long-term care home with advanced-stage dementia must often make important and difficult decisions, including ones that impact the resident’s end-of-life. Healthcare professionals must support them in this decision-making process. The aim of this study was to propose a theory on nurses’ support of relatives who make end-of-life decisions for a resident living with dementia in a long-term care home.MethodA constructivist grounded theory approach was used, with a theoretical sample of nine nurses and 10 relatives whom we met for face-to-face interviews. Three documents on end-of-life care, which were available in the study setting, were also included. The analysis was carried out using the method proposed by Charmaz.FindingsThe findings highlight the importance of building a strong and trusting relationship between nurses and relatives. Furthermore, exploring the refusal of palliative or end-of-life care, supporting relatives’ need to witness firsthand the condition of the person living with dementia, and education at a “good” time are useful interventions that nurses can make to support relatives’ decision-making.ConclusionBetter support of relatives in end-of-life decision-making improves the well-being of relatives and older people living with dementia alike.

Hearing Screening for Residents in Long-Term Care Homes Who Live with Dementia: A Scoping Review.

Background:Hearing loss is highly prevalent in older adults, particularly among those living with dementia and residing in long-term care homes (LTCHs). Sensory declines can have deleterious effects on functioning and contribute to frailty, but the hearing needs of residents are often unrecognized or unaddressed.Objective:To identify valid and reliable screening measures that are effective for the identification of hearing loss and are suitable for use by nursing staff providing care to residents with dementia in LTCHs.Methods:Electronic databases (Embase, Medline, PsycINFO, CENTRAL, and CINAHL) were searched using comprehensive search strategies, and a stepwise approach based on Arksey & O’Malley’s scoping review and appraisal process was followed.Results:There were 193 scientific papers included in the review. Pure-tone audiometry was the most frequently reported measure to test hearing in older adults living with dementia. However, measures including self- or other-reports and questionnaires, review of medical records, otoscopy, and the whisper test were found to be most suitable for use by nurses working with older adults living with dementia in LTCHs.Conclusion:Although frequently used, the suitability of pure-tone audiometry for use by nursing staff in LTCHs is limited, as standardized audiometry presents challenges for many residents, and specific training is needed to successfully adapt test administration procedures and interpret results. The whisper test was considered to be more suitable for use by staff in LTCH; however, it yields a limited characterization of hearing loss. There remains an urgent need to develop new approaches to screen hearing in LTCHs.

Working Conditions Supporting Person-Centered Care of Persons Living with Dementia in Long-Term Care Homes

The COVID-19 pandemic has underscored the importance of person-centered dementia care and working conditions that support such care in long-term care (LTC) home settings. Personal support workers (PSWs), known also as certified nursing assistants, provide the most direct formal care for persons living with dementia. However, little is known about the working conditions that enable person-centered care. Accordingly, the purpose of this study was to examine the working conditions and the impact of those conditions on PSWs in LTC homes. PSWs (N=39) employed at one of five LTC homes in southwestern Ontario, Canada participated in a series of one-hour focus groups before, during, and after Be-EPIC, a person-centred communication training program for formal caregivers of persons living with dementia. Using an interpretive description investigative framework, textual data from focus group conversation transcripts were open-coded into categories. Overarching themes were interpreted inductively. Study credibility was enhanced through investigator triangulation. Three themes emerged related to working conditions of PSWs: dementia care is complex, lack of trained staff to provide person-centered dementia care, and residents’ families are not situated in the residents’ care circle. Four themes emerged related to the impact of current working conditions of PSWs: occupational burnout, poor resident care, frustrated and disengaged families, and PSWs leave their role. The findings offer opportunities for employers to ameliorate working conditions to support person-centered care. We conclude with specific workplace recommendations that respond to the complexity of dementia care and the associated occupational stresses PSWs experience in the current LTC environment.

Launching 'Namaste Care' in Canada: findings from training sessions and initial perceptions of an end-of-life programme for people with advanced dementia.

Multisensory approaches and programmes have been developed to improve the quality of both life and dying for people with advanced dementia. However, little is known about the experiences of staff, family and others involved in the use of these programmes, and in the relevant education provided to improve the quality of life of residents living with advanced dementia in long-term care homes. The aim of this study was to explore early experiences associated with the implementation of a new programme called 'Namaste Care' in two Canadian long-term care homes. A multiple methods design was used. This included a survey to evaluate a 2-day education programme and qualitative description of interview data that explored experiences during the first 3 months of implementation. Survey respondents included 44 long-term care staff and 44 others (primarily family) who had attended a 2-day training session or public lecture. Interviews were undertaken with 18 staff, 5 family members and 2 volunteers to generate qualitative descriptions about the last 3 months of implementation of the 2-day education programme. The majority of those who attended training rated this as excellent and affirmed that they now understood the purpose of 'Namaste Care'. Most endorsed that they had learned some essentials of 'Namaste Care' delivery. The majority of those who attended the public lecture were very satisfied with the education, and better understood how this novel programme could be implemented in long-term care. Qualitative description of interview data revealed that participants were positive about 'Namaste Care' in long-term care, and identified both barriers and facilitators to implementation as well as recommendations to help with future implementation. These study findings support the use of a facility-wide educational programme to help launch a new innovation in long-term care.

Effects of person-centered care at the organisational-level for people with dementia. A systematic review.

The aim of the systematic review was to determine the effectiveness of organizational-level person-centered care for people living with dementia in relation to their quality of life, mood, neuropsychiatric symptoms and function. ALOIS, the Cochrane Dementia and Cognitive Improvement Group Specialised Register databases, were searched up to June 2018 using the terms dementia OR cognitive impairment OR Alzheimer AND non-pharmacological AND personhood OR person-centered care. Reviewed studies included randomized controlled trials (RCTs), cluster-randomized trials (CRTs) and quasi-experimental studies that compared outcomes of person-centered care and usual (non-person-centered) care, for people with a diagnosis of dementia. The search yielded 12 eligible studies with a total of 2599 people living with dementia in long-term care homes, 600 receiving hospital care and 293 living in extra-care community housing. Random-effects models were used to pool adjusted risk ratios and standard mean differences from all studies; the findings were assessed followed the PRISMA guidelines and GRADE criteria. Statistical heterogeneity was assessed using the I2 method and Chi2 P value; studies with low statistical heterogeneity were analyzed using a random-effects model with restricted maximum likelihood estimation in R. Analyses of pre/post data within 12 months identified: a significant effect for quality of life (standardized mean difference (SMD) 0.16 and 95% CI 0.03 to 0.28; studies = 6; I2 = 22%); non-significant effects for neuropsychiatric symptoms (SMD 0.06, 95% CI -0.08 to 0.19; studies = 4; I2 = 0%) and well-being (SMD 0.15, 95% CI -0.15 to 0.45; studies = 4; I2 = 77%); and no effects for agitation (SMD -0.05 (95% CI -0.17 to -0.07; studies 5; I2 = 0%) and depression (SMD -0.06 and 95% CI -0.27 to 0.15, studies = 5; I2 = 53%). The evidence from this review recommends implementation of person-centered care at the organizational-level to support the quality of life of people with living with dementia.

Nutrition Care for Residents with Dementia in Long-Term Care Homes: Umbrella Review of Care Aide and Registered Dietitian Services

Recent attention has highlighted the distinct food and nutrition needs of residents with dementia living in long-term care (nursing homes). Nutrition care involves assessment of nutritional need, along with providing safe and appropriate food that fulfills nutritional requirements. Within long-term care, much of the direct care responsibilities lies with care aides who provide the day-to-day assistance including at mealtimes; however, it is the registered dietitian (RD) who provides specialized nutrition care. We sought to examine how roles and responsibilities of care aides and dietitians were described in long-term care settings. As many systematic reviews addressing nutrition care in dementia have appeared in the past two decades, we examined these using an Umbrella Review protocol. Ten papers were retrieved which examined nutrition services for dementia residents. These were diverse in nature. While all addressed some aspect of nutrition and the need for appropriate staffing, only three noted and discussed care aides and only three either noted or made recommendations for involvement of dietitians. Thus, the lack of attention to RDs and care aides represents a true gap that must be addressed in order for recommendations to enhance nutrition care for residents with dementia to be effective. Funding statement: This work was supported by scholarship awards to A.C. from Alzheimer Society of Canada Quality of Life Doctoral Fellowship, a Public Health and the Rural Agricultural Ecosystem (PHARE) graduate trainee fellowship, CIHR-STIHR, University of Saskatchewan.

Meaningful connections in dementia end of life care in long term care homes

BackgroundMost persons with dementia die in long term care (LTC) homes, where palliative approaches are appropriate. However, palliative approaches have not been widely implemented and there is limited understanding of staff and family experiences of dying and bereavement in this context.MethodThis descriptive qualitative study explored family and staff experiences of end of life and end of life care for persons with dementia in LTC homes. Eighteen focus groups were conducted with 77 staff members and 19 relatives of persons with dementia at four LTC homes in four Canadian provinces.ResultsThree themes emerged: knowing the resident, the understanding that they are all human beings, and the long slow decline and death of residents with dementia.DiscussionIntimate knowledge of the person with dementia, obtained through longstanding relationships, was foundational for person-centred end of life care. Health care aides need to be included in end of life care planning to take advantage of their knowledge of residents with dementia. There were unmet bereavement support needs among staff, particularly health care aides. Persons with dementia were affected by death around them and existing rituals for marking deaths in LTC homes may not fit their needs. Staff were uncomfortable answering relatives’ questions about end of life.ConclusionsLongstanding intimate relationships enhanced end of life care but left health care aides with unmet bereavement support needs. Staff in LTC homes should be supported to answer questions about the trajectory of decline of dementia and death. Further research about residents’ experiences of deaths of other residents is needed.

The circumstances surrounding the death of 105 elders as a result of resident-to-resident incidents in dementia in long-term care homes

ABSTRACTResident-to-resident incidents in dementia in long-term care homes resulting in deaths represent a growing concern among residents, family members, care providers, care advocacy organizations, and policy makers. Despite these concerns and experts’ predictions by which injurious and fatal incidents will increase in the coming years due to the projected growth in the number of people with dementia, no studies have been conducted in North America on these fatal incidents. This exploratory pilot study makes first steps towards bridging this major gap in research and practice. Using publicly available information (primarily newspaper articles and death review reports), practically useful patterns were identified pertaining to the circumstances surrounding the death of 105 elders as a result of these incidents. The findings could inform various efforts to prevent future deaths in similar circumstances, keep vulnerable and frail residents safe, and encourage researchers to examine risk and protective factors for these incidents.

Food security: who is being excluded? A case of older people with dementia in long-term care homes.

To explore the extent of food security among older people, particularly those with cognitive impairments residing in Canadian long-term care homes (LTCHs) through a focused review of literature. Databases including Medline, Nursing and Health Sciences (SAGE), Psych Info, Social Sciences Abstract, the Cumulative Index of Nursing and Allied Health Literature (CINAHL) and HealthSTAR were searched for peer-reviewed articles related to food experiences of older individuals in industrialized countries including Canada. Only articles that were published in English between 1997-2012 were included. Sixty two studies met the inclusion criteria. Of those 17 focused on older adults in LTCHs. The review found that food security has rarely been examined among older persons living in LTCHs, and has never been examined within the context of cognitive impairment. While a few studies have focused on residents' satisfaction with foods that are provided to them in LTCHs, none have explored the extent of food security in this population. Furthermore, food satisfaction surveys in the LTCH are limited to the assessment of foods that are served to residents, and do not capture residents' food accessibility beyond the food dispensing routines of the organization. Thus, food quality, food preferences, and the traditional meanings and rituals associated with food consumption are not purposefully evaluated. In addition, LTCHs are not required to monitor residents' food satisfaction using a consistent, regular, and standardized approach and there is no regulation in the LTCH Act that requires LTCHs to assess their residents' food security. The findings highlight the need for: 1) expansion of food security research to non-community-based settings including LTCHs; 2) re-conceptualization of food security and modification of measurement tools to assess the extent and determinants of food security among older adults in LTCHs; 3) mandatory monitoring of food security via standardized and regular surveys tailored to meet the unique preferences and needs of the older population, particularly those with dementia; and 4) education of healthcare professionals regarding food security and its assessment in LTCHs.

Dementia in Long-term Care Homes: Direct Care Workers’ Difficulties

Increasing numbers of people with dementia are being admitted to long-term care facilities. Behavioural and psychological symptoms of dementia (BPSD) are particularly challenging to care homes which are commonly characterised by a low-skilled workforce. The increasing demand for higher quality dementia care emphasizes the need to address the Direct Care Workers’ (DCWs) difficulties, as this can inform the development of effective training interventions. This study aimed to explore the difficulties faced by DCWs caring for people with dementia in long term care homes. A qualitative cross-sectional study was conducted with 58 DCWs (female; mean age 44.63 ± 2.32). Eight focus-group interviews were performed to collect data. All interviews were video-recorded, transcribed and submitted to thematic analysis by two independent judges. Main difficulties faced by DCWs were related to: i) lack of time to provide personalised care and interact with residents, particularly during morning care; ii) management of the BPSD (e.g., agitation); iii) lack of knowledge about dementia and its symptoms, evolution and available treatments; iv) communication with residents; and v) stress and burnout related to BPSD. The findings underline the importance of training programmes for DCWs that provide both information and skills for dementia care that can be implemented during personal care tasks, and support to deal with stress and burnout. This is essential as training interventions are usually targeted on DCWs’ care knowledge and skills, neglecting the psychological pressure experienced by these workers.

Food security: Who is being excluded? A case of older people with dementia in long-term care homes

Food security: Who is being excluded? A case of older people with dementia in long-term care homes

Under-recognition of dementia in long-term care homes in Hong Kong

Objective: To examine the extent to which dementia in nursing homes is recognized by staff. Methods: About 189 residents with very mild to moderate dementia (Clinical Dementia Rating, CDR ≥ 0.5) and Mini-Mental State Examination (MMSE) = 10–24 were recruited from 12 nursing homes in Hong Kong. A senior staff in each home provided information on whether the participant was known to have dementia, and if so, the exact diagnosis. Logistic regression was conducted to predict identification by age, gender, whether for-profit or non-profit home, length of stay, MMSE, CDR, activities of daily living, and use of cholinesterase inhibitors and antipsychotic medications. Results: It was observed that 42.3% of the sample had mild dementia and 14.8% had moderate dementia. Although identification rates increased with increasing severity of cognitive impairment, only 30.0% of those with mild dementia and 64.3% of those with moderate dementia were known to have dementia by the homes. Identification rates did not differ between for-profit homes and non-profit homes which had regular MMSE screening. Logistic regression analysis showed that only MMSE (OR = 0.85, 95% CI = 0.76–0.95, p = 0.005) and CDR = 2 (as compared with CDR = 0.5; OR = 4.78, 95% CI = 1.23–18.65, p = 0.024) were significantly associated with dementia recognition. No other factors were related to dementia recognition. Conclusions: Despite a high prevalence of dementia in long-term care facilities, recognition of dementia as a medical condition in residents by staff was suboptimal, and MMSE screening in some homes did not seem to increase awareness significantly.