Sharon Kaasalainen

• RN, BScN, MSc, PhD
• Professor at McMaster University

Background An early palliative approach to care may best suit the care needs of older persons with frailty living in long-term care (LTC). The study objective was to evaluate the barriers and facilitators to care for frailty in the LTC setting. Methods Semi-structured interviews were completed with physicians, nurse practitioners, registered nurse...

Palliative care has earned its place as a respected approach to medicine that focuses on quality of life, symptom management, a team approach, and family involvement, typically following the diagnosis of a life-limiting illness. To improve health equity, it is important to encourage the adaptation of palliative care practice and philosophy beyond h...

We evaluate the feasibility, acceptability, and potential effect of an acceptance and commitment therapy (ACT) tele-counselling program offered by a non-profit organization for care partners of persons with dementia (PWD) in a bilingual rural province. Thirty participants enrolled and one withdrew. Intervention group participants ( n = 14) received...

Importance Care decisions for long-term care (LTC) residents should be frailty-informed to maximize well-being and avoid burdensome treatments that do not align with patient wishes. Objective To investigate the incidence and time spent living with severe impairment among LTC residents to help inform person-centered decision-making. Design, Settin...

We evaluate the feasibility, acceptability and potential effect of an Acceptance and Commitment Therapy [ACT] tele-counselling program offered by a non-profit organization for care partners of persons with dementia [PWD] in a bilingual rural province. Thirty participants enrolled and one withdrew. Intervention group participants (n=14) received 6-8...

Introduction Long-term care (LTC) residents are frequently transferred to acute care hospitals. Transfer decisions should align with residents’ wishes and goals. Decision to transfer to hospital, when not aligned with the resident’s wishes, can result in transfers that are harmful to residents, leaving residents in a state of disability that could...

Background: Namaste Care is an intervention designed to improve the quality of life for people with advanced dementia by providing individualised stimulation and personalised activities in a group setting. Current evidence indicates there may be benefits from this intervention, but there is a need to explore the practical realities of its implemen...

Introduction Long-term care (LTC) residents require extensive assistance with daily activities due to physical and cognitive impairments. Medical treatment for LTC residents, when not aligned with residents’ wishes, can cause discomfort without providing substantial benefits. Predictive models can equip providers with tools to guide treatment recom...

Video-assisted patient education is a favored format for accessing healthcare information. Based on a consultative process, the purpose of this project was to create and evaluate a video education resource to support communication between staff and family caregivers in Canadian long-term care (LTC) homes when introducing a palliative approach to ca...

Despite the high mortality rates in long term care (LTC), most LTC homes do not have a formalized palliative program. Communication with family members or care partners is critical to prepare them for end-of-life and promotes shared decision-making. The aim of this study was to explore family perceptions about engaging in Palliative Care Conference...

Introduction Burdensome care transitions may occur despite clinicians’ engagement in care planning discussions with residents and their family/friend care partners. Conversations about potential hospital transfers can better prepare long-term care (LTC) residents, their families and care providers for future decision-making. Lack of such discussion...

Background A Strategic Guiding Council (SGC) was created within a Family Carer Decisions Support study, to engage family carers of persons with advanced dementia as advisors to inform the design and implementation of the study. The SGC consists of an international group of family advisors from Canada, the Republic of Ireland, the United Kingdom, th...

Background Namaste Care offers practical skills for healthcare providers, volunteers, and families to meaningfully engage individuals with dementia in activities (e.g., music, massage, reminiscing, socialization, aromatherapy, snacks). A hospital-based specialized dementia care unit for patients with mid- to late-stage dementia offered an adapted v...

Background Residents in long-term care homes (LTCHs) are often diagnosed with chronic, life-limiting illnesses, and it is now a common site to provide high levels of care and eventual death. There is an urgent need to address communication gaps and uncertainties surrounding resident's end of life preferences. Nurses are well situated to be key faci...

Background Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life. Aim To develop a multidimensional international palliative care goals model in dementia for use in practice. Design...

Objective To explore the impact of a 2-day, in-person interprofessional palliative care course for staff working in long-term care (LTC) homes. Methods A qualitative descriptive study design was employed. LTC staff who had participated in Pallium Canada’s Learning Essential Approaches to Palliative Care LTC Course in Ontario, Canada between 2017 a...

Background and objectives The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention, has been designed to inform family carers about end-of-life care optio...

Background Patient 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 e...

Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalized palliative program. Hence, our research team developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) program. This presentation will address how the SPA-LTC intervention was designed to be scaled up in a large randomized control trial...

As part of the Strengthening a Palliative Approach in Long Term Care (SPA-LTC), we have designed and evaluated a number of tools and resources to promote a palliative approach in dementia, including a Canadian version of the Conversation Starter Kit (CSK) booklet. We used participatory action research to design tools for use with care providers bas...

Objectives: Acceptance and commitment therapy (ACT) is a relatively new type of psychotherapy effective for treating depression and anxiety amongst family care partners of persons living with dementia [PLWD]. However, care partner engagement in mental health services is low and specific guidelines for designing ACT programs for care partners of PL...

Introduction Despite the high mortality rates in long-term care (LTC) homes, most do not have a formalised palliative programme. Hence, our research team has developed the Strengthening a Palliative Approach in Long Term Care (SPA-LTC) programme. The goal of the proposed study is to examine the implementation and effectiveness of the SPA-LTC progra...

Introduction Shortened hospital stays have shifted the burden of care for older adults to community, informal (ie, family, caregiver) and formal post-acute care and services, highlighting the need for effective post-hospital stay services and programs. As there is a dearth of information related to community-based, slow-stream rehabilitation progra...

Background Long-term care (LTC) settings are becoming home to an increasing number of people living with advanced or late-stage dementia. Residents living with advanced dementia represent some of society’s most vulnerable and socially excluded populations and are thus at an increased risk of social isolation. A multisensory intervention tailored to...

The purpose of this study was to examine the perspectives of support staff, health care professionals, and care coordinators working in or referring to a community-based, slow-stream rehabilitation, hospital-to-home transition program regarding gaps in services, and barriers and facilitators related to implementation and functioning of the program....

Background: A disproportionate number of COVID-19-related deaths in Canada occurred in long-term care homes, affecting residents, families and staff alike. This study explored the experiences of long-term care clinicians with respect to providing palliative and end-of-life care during the COVID-19 pandemic. Methods: We used a qualitative researc...

Objective: To evaluate the feasibility and effects of the Namaste Care intervention for persons with advanced dementia (ie, moderate and late-stage) in long-term care (LTC) and their family carers. Design: A pre-posttest study design. Staff carers delivered Namaste Care for residents with the support of volunteers in a small group setting. Activ...

Background Residential long-term care settings are becoming home to an increasing number of people living with advanced or late-stage dementia. Residents living with advanced dementia represent some of society’s most vulnerable and socially excluded population and are thus at an increased risk of social isolation. A multisensory intervention tailor...

Background Meaningful engagement has been described as active participation based on a person’s interests, preferences, personhood, or perceived value. It has many benefits for persons living with dementia in long-term care (LTC) homes, including improvement in physical and cognitive function, and mental health. People with advanced dementia contin...

Background and Objectives Strategies to manage the COVID-19 pandemic included widespread use of physical distancing measures. These well intended strategies adversely affected long-term care (LTC) residents’ socialization and their caregiving arrangements, leading to exacerbation of social isolation and emotional distress for both residents and the...

Background: Long-term care (LTC) homes have been disproportionately impacted during COVID-19. Purpose: To explore the perspectives of stakeholders across Canada around implementing a palliative approach in LTC home during COVID-19. Methods: Qualitative, descriptive design using one-to-one or paired semi-structured interviews. Results: Four t...

Background: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. Objectives: to investigate whether...

This study used a single-group pre-test and post-test design to evaluate an educational workshop for multidisciplinary staff working in long-term care homes on implementing a palliative approach to care and perceptions about advanced care planning conversations. Two outcomes were measured to assess the preliminary efficacy of the educational worksh...

Background Before the COVID-19 pandemic, many long-term care (LTC) homes experienced difficulties in providing residents with access to primary care, typically delivered by community-based family physicians or nurse practitioners (NPs). During the pandemic, legislative changes in Ontario, Canada enabled NPs to act in the role of Medical Directors t...

TThis presentation will share research findings about experiences during COVID-19 about implementing a virtual palliative toolkit in long-term care in Canada. The toolkit includes tools and practices to: (a) engage residents and families with dementia within a palliative approach to care, (b) develop workforce capacity through online education modu...

The COVID-19 pandemic rattled Canada's long-term care (LTC) sector by exacerbating the ingrained systemic and structural issues, resulting in tragic consequences for the residents, family members and LTC staff. At the core of LTC's challenges is chronic under-staffing, leading to lower quality of care for residents and higher degrees of moral distr...

Family caregivers play a vital role in supporting the physical and mental health of long-term care (LTC) residents. Due to LTC visitor restrictions during the COVID-19 pandemic, residents (as well as family caregivers) showed significant adverse health outcomes due to a lack of family presence. To respond to these outcomes, eight implementation sci...

Plain language summary As older persons with dementia transition from early to moderate or advanced stages of dementia they require more support from family and friend caregivers to accomplish their daily activities. Caregivers, however, often report a lack of preparation for their caregiving role. There are few programs focusing on skill-building...

Medical assistance in dying (MAID) is legal in Canada but cannot be accessed through an advance request. Some data suggest that informal care-givers of persons with dementia support the legalisation of advance requests for MAID. Opponents argue that care-givers' support is due to society's failure to address their well-documented burden and unmet n...

Background Caregivers have considerable responsibilities in supporting persons in advanced stages of dementia, however they receive little education. Namaste Care is a multisensory program originally designed to be delivered by healthcare providers in long-term care homes for persons with advanced dementia. The program has not yet been adapted and...

Aims and Objectives To enhance the practice of a person‐centred palliative approach in long‐term care. Background Implementing a person‐centred palliative approach in long‐term care entails placing residents at the centre of care planning that attends to the ‘whole’ person, rather than prioritising biomedical needs. Design We conducted a four‐sta...

Aims To explore experiences of family caregivers providing support to older persons with delirium superimposed on dementia in acute care hospitals, their role in detection and management of this condition, and support they require. Design This study has an exploratory‐descriptive design using interpretive description methodology. Methods Semi‐str...

Background: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the...

Long-term care (LTC) residents often experience poor quality of life (QOL). Culture change has been proposed as an approach to improve resident centredness in care, thereby aiming to enhance residents' QOL. This article reports on one of the findings of the implementation of an organisational culture change approach, Neighbourhood Team Development...

Background Residents living in long-term care homes (LTCH) have complex care needs, multiple chronic conditions, increasing frailty and cognitive impairment. A palliative approach that incorporates advance care planning (ACP) should be integrated with chronic disease management, yet it is not a norm in most LTCHs. Despite its growing need, there re...

Healthcare volunteers make important contributions within healthcare settings, including long-term care. Although some studies conducted in long-term care have shown that volunteers contribute positively to the lives of people living with advanced dementia, others have raised questions about the potential for increasing volunteers’ involvement. The...

Family/friend caregivers are highly involved in supporting older adults with dementia who are 65 years of age or older with daily activities, especially when these older adults with dementia are living at home. There is a need for psychosocial interventions for caregivers of older adults with moderate to advanced dementia, as most interventions foc...

Reflecting on sustained calls for patient-centredness and culture change in long-term care, we evaluated the relative importance of personal and organisational predictors of palliative care, hypothesising the former as weaker predictors than the latter. Health-care employees (N = 184) from four Canadian long-term care homes completed a survey of pe...

Background Research on the nature of a “good death” has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. Methods We combined published qualitative studies about end of...

Background To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. Methods We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic,...

This interpretative, qualitative study explored residents’ and families’ perspectives on advance care planning (ACP) in long-term care (LTC). Perspectives on when, how, and with whom ACP discussions should be introduced and barriers and solutions to improving ACP engagement were examined. Fifty-one residents and families participated in seven focus...

Introduction The Strategic Guiding Council is an international patient and public involvement (PPI) panel that was formed to consult on the implementation of a long-term care (LTC) caregiver support intervention, known as the Family Carer Decision Support (FCDS) study. The FCDS study was implemented in Canada, Ireland, the United Kingdom, the Nethe...

This study evaluated an advance care planning intervention, the Conversation Starter Kit (CSK) booklet, for use in long term care (LTC) homes. This study used a quasi-experimental, one group pre/post design. Quantitative surveys were administered before and after a 3-month advance care planning intervention (CSK booklet). Data were collected at thr...

Introduction Advance care planning can improve the quality of life for residents in long-term care homes and reduce stress for families. However, care home staff and families often lack knowledge about advance care planning, making it especially difficult for residents with dementia to communicate their care plan wishes. A Conversation Starter Kit...

Background While advance care planning (ACP) has been shown to improve the quality of end-of-life (EOL) communication and palliative care, it is rarely practiced in long term care (LTC) homes, where staff time to support the process is limited. This study examines the potential of a publicly available self-directed ACP workbook distributed to LTC r...

COVID-19 pandemic has resulted in a significant increase in deaths in long-term care homes (LTCH). People with dementia living in LTCHs represent one of the most frail and marginal­ized populations in Canada. The surge of COVID-19 cases in LTCHs and rationing of health-care resources during the pandemic have amplified the pre-existing need for impr...

Objective We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions abo...

Objectives Family caregivers of persons with dementia rarely feel prepared for end of life although preparedness predicts outcomes in bereavement. The Caring Ahead: Preparing for End-of-Life With Dementia questionnaire was developed to measure family caregiver death preparedness. The aim of this study was to evaluate questionnaire psychometrics and...

Background Optimal supportive end of life care for frail, older adults in long term care (LTC) homes involves symptom management, family participation, advance care plans, and organizational support. This 2-phase study aimed to combine multi-disciplinary opinions, build group consensus, and identify the top interventions needed to develop a support...

Objectives: To assess the feasibility of a randomized controlled trial (RCT), evaluating the efficacy and patients' perceptions of a psychological intervention aimed at reducing anxiety levels in adults undergoing first-time colonoscopy. Methods: Adults undergoing first-time colonoscopy were randomized to a psychological intervention vs. sham in...

Purpose Inflammatory bowel disease (IBD) significantly impacts patients’ quality of life and imposes a considerable psychological, social, and financial burden. While the relationship between disease activity and quality of life is well established, the subjective challenges of living with IBD are more difficult to assess, and suggestions for impro...

Background Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to...

Background Fecal microbiota transplantation (FMT) is a promising experimental therapy for ulcerative colitis (UC), yet patient acceptance remains poorly understood. Aims The aim of this study was to explore perceptions and experiences of adult patients who received FMT for UC. Methods This study used a qualitative descriptive design with thematic...

Objectives Despite known benefits, advance care planning (ACP) is rarely a component of usual practice in long-term care (LTC). A series of tools and workbooks have been developed to support ACP uptake amongst the generable population. Yet, their potential for improving ACP uptake in LTC has yet to be examined. This study explored if available ACP...

A palliative approach is recommended in long-term care to support persons with dementia and help families prepare for end-of-life. Despite this, 50% of family caregivers of persons with dementia report feeling unprepared for death. A questionnaire is needed to assess caregiver death preparedness as an outcome measure for strategies within palliativ...

We aimed to develop question prompt lists for family caregivers of nursing home residents with advanced dementia to augment advance care planning conversations. In the context of a joint European-Canadian study, we used standardized nominal group methods to create country-specific lists of questions. (Bereaved) family caregivers of persons with dem...

Advance care planning (ACP) is still rare in Canadian long-term care (LTC) homes. Residents and their families view ACP as uncomfortable and difficult to implement, leading them to avoid these discussions. The purpose of this study was to explore the perceptions of LTC residents and their families about using an ACP tool called The Conversation Sta...

Background Older adults with multiple chronic conditions (MCC) rely heavily on caregivers for assistance with care. However, we know little about their psychosocial experiences and their needs for support in managing MCC. The purpose of this study was to explore the experiences of caregivers of older adults living in the community with MCC. Method...

The current study aimed to investigate the effects of a Namaste care program on the quality of life of 25 women with late-stage Alzheimer's disease. The program was implemented two hours daily and four days per week for six months in a nursing facility, Tehran, Iran. Women's quality of life was measured using the Persian version of the Quality of L...

Aim The aim of this study is to adapt and evaluate the feasibility, acceptability, and preliminary effectiveness of a multisensory, psychosocial intervention called Namaste Care delivered by family and friend caregivers of community‐dwelling older adults with moderate to advanced dementia. Design A multiphase mixed methods design combining quantit...

Introduction: The acute care setting is not ideal for older people with dementia; responsive behaviours may be triggered when care is delivered within a strange environment by staff with limited knowledge of life history and personal preferences. Responsive behaviours (e.g., yelling, hitting, restlessness) are used by older people with dementia to...

Objectives: Despite known benefits, advance care planning (ACP) is rarely a component of usual practice in long-term care (LTC). A series of tools and workbooks have been developed to support ACP uptake. Yet, their acceptability and relevance for LTC has yet to be examined. This study explored the extent to which available ACP materials hold promis...

Introduction Caregivers of persons with dementia experience challenges that can make preparing for end-of-life particularly difficult. Feeling prepared for death is associated with caregiver well-being in bereavement and is promoted by strategies supporting a palliative approach. Further conceptualization of caregiver preparedness for death of pers...

Objective The COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents a...

Background: Despite increased annual mortality in long-term care (LTC) homes, research has shown that care of dying residents and their families is currently suboptimal in these settings. The purpose of this study was to evaluate resident and family outcomes associated with the Strengthening a Palliative Approach in LTC (SPA-LTC) program, develope...

Nurses may not prompt or offer assistance with oral hygiene care activities to patients who do not ask for help because they appear independent in their ability to perform their oral hygiene care. That is, nurses may be inclined to preserve patient autonomy over ensuring adequate oral hygiene outcomes. The purpose of this qualitative Interpretive D...

Objective Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers’ perceptions of a good death. To address th...

Preparedness for end-of-life in dementia is a direct, holistic outcome measure for strategies supporting a palliative approach, however current preparedness questionnaires have limitations. In this study we aimed to develop the Caring Ahead: Preparing for End-of-Life in Dementia questionnaire to be used as a holistic, outcome measure for strategies...

Background: Residents living and dying in long-term care (LTC) homes represent one of society's most frail and marginalized populations of older adults, particularly those residents with advanced dementia who are often excluded from activities that promote quality of life in their last months of life. The purpose of this study is to evaluate the f...

Background Fecal microbiota transplantation (FMT) is under active investigation as a popular treatment option for a variety of diseases, including ulcerative colitis (UC). Despite increasing evidence for its therapeutic role, the current literature is limited in its scope to assess firsthand patient experiences. Aims To exlore perceptions, attitud...

Objectives: In this qualitative study we aimed to explore the end-of-life experiences of caregivers of persons with dementia to: 1) understand factors perceived as influencing preparedness for death; and 2) identify the core concepts, barriers and facilitators of preparedness for death for caregivers in dementia. Findings: Four themes were ident...

Background Faecal microbiota transplantation (FMT) is widely being studied for its therapeutic efficacy for a variety of ailments. Despite its gaining popularity, there is a limited understanding of firsthand patient experiences. We explored perceptions of patients who chose to pursue FMT and patients who declined FMT in favour of conventional medi...

Objective: The aim of this study was to describe the transition-to-practice experience of new-graduate nurses (NGNs) in long-term-care (LTC) settings. Background: Transitioning to professional practice is a challenging time for an NGN. This experience is scarcely described for RNs outside of acute care settings and not described for the LPN. Me...

BACKGROUND Fecal microbiota transplantation (FMT) is becoming popular treatment option for a variety of diseases, including ulcerative colitis (UC). Despite increasing evidence for its role as a therapeutic, currently available literature is limited in its scope to assess firsthand patient experiences. We explored perceptions, attitudes, and experi...

Background: Living with multiple chronic conditions (MCC), the coexistence of two or more chronic conditions, is becoming more prevalent as the population ages. Primary care and home care providers play key roles in caring for older adults with MCC such as facilitating complex care decisions, shared decision-making, and access to community health...

Background: Despite increased annual mortality in long-term care (LTC) homes, research has shown that care of dying residents and their families is currently suboptimal in these settings. The purpose of this study was to evaluate resident and family outcomes associated with the Strengthening a Palliative Approach in LTC (SPA-LTC) program, developed...

The management of multiple chronic conditions (MCC) in older adults living in the community is complex. Little is known about the experiences of interdisciplinary primary care and home providers who care for this vulnerable group. The aim of this study was to explore the experiences of healthcare providers in managing the care of community-living o...

The need for a palliative approach in long term care (LTC) is widely recognized. However, advance care planning (ACP) is still rare. The purpose of this study was to explore the perceptions of LTC residents and their families about using an ACP tool called The Conversation Starter Kit (CSK). This study utilized a mixed methods approach. Data was co...

Objectives: Long-term care (LTC) is an important setting for goals of care (GoC) discussions. Understanding clinician barriers to GoC discussions could identify opportunities for LTC-specific interventions to improve quantity and quality of GoC discussions in the context of serious illness. Design: A multicenter, cross-sectional survey study. S...

Objective: The purpose of this study was to conduct a stakeholder analysis of the strengthening a palliative approach to long-term care (SPA-LTC) model and refine it based on feedback from long-term care (LTC) residents and their families, staff, researchers and decision makers. Methods: We used a mixed-methods design to conduct a stakeholder an...