Person‐centered care for family caregivers of people living with dementia: Co‐designing an education program for the healthcare workforce

Abstract Background Research recommends the healthcare workforce receive competency-based education to support family-caregivers [FCGs}. typically, education has been directed at FCG’s to increase their care skills rather that at healthcare providers to provide person-centered care to FCGs. Objectives: We present the co-design process used to create a competency-based education program for the healthcare workforce that ensures a person-centered focus on FCGs and introduce our Health Workforce Caregiver-Centered Care Education. Approach: Co-design is the act of creating with stakeholders to ensure useable results that meet stakeholder’s needs. We began by coining the concept “caregiver-centered care,” defined as a collaborative working relationship between families and healthcare providers aimed at supporting FCGs in their caregiving role, decisions about care management, and advocacy. From this definition we co-designed, then validated the Caregiver-Centered Care Competency Framework in a Delphi Process. Stakeholders (n= 101) including FCGs, providers, policy makers, community organizations, researchers, and educational designers then used effective practices for health workforce education to co-design the ‘foundational’ level of a Caregiver Centered Care education. Results Teaching and learning resources include six competency-aligned educational modules with videos and interactive exercises that encourage reflection. With the COVID-19 pandemic, we moved the education online (caregivercare.ca). In the first four months online, 815healthcare providers completed the education. We continue to use mixed methods to evaluate the Caregiver-Centered Care Education, for acceptability and effectiveness, in five care contexts (primary, acute, home, supportive living, long-term care). Conclusion We expect that our education will support caregiver-centered care in all healthcare settings.

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Person-Centered Care for Family Caregivers: Evaluating an Education Program for the Healthcare Workforce

Innovation in Aging ◽

10.1093/geroni/igab046.1884 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 490-490

Author(s):

Sharon Anderson ◽

Jasneet Parmar ◽

Cheryl Pollard ◽

Bonnie Dobbs ◽

Myles Leslie ◽

...

Keyword(s):

Mixed Methods ◽

Family Caregivers ◽

Education Program ◽

Healthcare Providers ◽

Evaluation Framework ◽

Care Education ◽

Mixed Methods Evaluation ◽

Person Centered Care ◽

Healthcare Workforce ◽

Centered Care

Abstract Background While family caregivers [FCGs] provide 75-90% of care for people living in the community, most healthcare providers are not trained to provide person-centered care to FCGs. We followed research recommendations that the healthcare workforce receive competency-based education to identify, assess, support and partner with FCGs. Objective Mixed methods evaluation healthcare workforce education program. Approach: We began by coining the concept “caregiver-centered care,” defining it as a collaborative working relationship between families and healthcare providers aimed at person-centered support for FCGs. From this definition, interdisciplinary stakeholders including FCGs (n=101) co-designed the Foundational Caregiver-Centered Care education. Learning resources included six competency-aligned educational modules with videos and interactive exercises that encourage reflection. Kirkpatrick Barr’s healthcare training evaluation framework underpinned our mixed methods evaluation. We measured participant’s reaction to the education (Level 1) and changes in learner’s knowledge and confidence to work with FCGs (Level 2). Results 352 healthcare providers completed the education online (caregivercare.ca). Learners were satisfied with quality of education (Mean 4.75/5; SD=.5) and the education increased their motivation to learn more about caregiver-centered care (Mean 4.75/5; SD .5). Student’s paired samples T-test indicates pre-post education changes in knowledge and confidence to work with FCGs were significant [Pre (M=37.8, Sd=7.6) to post (M=47.2, SD=3.5) t (125) = -14.39, p<.0005 (two-tailed)]. Qualitative results derived from open responses mirrored the quantitative results. Conclusion The Caregiver-Centered Care education provides a foundation for educating healthcare providers working with FCGs to provide care to FCGs to maintain their wellbeing and sustain care.

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Person‐centered care for family caregivers of people living with dementia: Evaluating an education program for the healthcare workforce

Alzheimer s & Dementia ◽

10.1002/alz.052447 ◽

2021 ◽

Vol 17 (S8) ◽

Author(s):

Jasneet Parmar

Keyword(s):

Family Caregivers ◽

Education Program ◽

Person Centered Care ◽

Healthcare Workforce ◽

Centered Care

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What is good communication for people living with dementia? A mixed-methods systematic review

International Psychogeriatrics ◽

10.1017/s1041610217001429 ◽

2017 ◽

Vol 29 (11) ◽

pp. 1785-1800 ◽

Cited By ~ 12

Author(s):

Sarah Alsawy ◽

Warren Mansell ◽

Phil McEvoy ◽

Sara Tai

Keyword(s):

Systematic Review ◽

Mixed Methods ◽

Family Caregivers ◽

Interpersonal Relationships ◽

Healthcare Professionals ◽

Eligibility Criteria ◽

Good Communication ◽

Person Centered Care ◽

People With Dementia ◽

Centered Care

ABSTRACTBackground:Many strategies have been recommended to support caregivers in communicating with people who live with dementia. However, less is known about what makes communication a good and meaningful experience from the perspective of people with dementia. Understanding this may enhance the person with dementia's sense of connectedness, strengthen their relationships, and facilitate person-centered care. The current review aimed to evaluate research that examined experiences of communication in people living with dementia. Studies that examined reports provided by people with dementia, healthcare professionals, and family caregivers were included.Methods:A mixed-methods systematic review was conducted using PsychINFO, MEDLINE, and EMBASE databases.Results:After applying the eligibility criteria, 15 studies were included. Although eight of these recruited people with dementia, only one focused on their perspectives of communication experiences and the remaining studies focused on the perspectives of family caregivers and healthcare professionals. These studies either explored experiences without suggestions of communication methods, “open exploration,” or through examining experiences of strategies, “exploration of strategies.” A significant theme was around communication difficulties that affected interpersonal relationships and activities of daily living. Conversely, personhood strategies and a strong underlying relationship were believed to facilitate communication. The one study that examined the perspectives of people with dementia emphasized the importance of retaining valued relationships and feeling respected during communication.Conclusions:The need to involve people with dementia in research, particularly around their experiences of communication, is evident. Such research would be imperative for facilitating person-centered care, strengthening social relationships, and informing training programs.

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“I Treat Him as a Normal Patient”: Unveiling the Normalization Coping Strategy Among Formal Caregivers of Persons With Dementia and Its Implications for Person-Centered Care

Journal of Transcultural Nursing ◽

10.1177/1043659617745137 ◽

2017 ◽

Vol 29 (5) ◽

pp. 420-428 ◽

Cited By ~ 1

Author(s):

Miriam Ethel Bentwich ◽

Nomy Dickman ◽

Amitai Oberman ◽

Ya’arit Bokek-Cohen

Keyword(s):

Family Caregivers ◽

Cross Cultural ◽

Coping Mechanism ◽

Cultural Groups ◽

Formal Caregivers ◽

Person Centered Care ◽

Russian Immigrants ◽

Emotional Outcomes ◽

Centered Care ◽

Person With Dementia

Introduction: Currently, 47 million people have dementia, worldwide, often requiring paid care by formal caregivers. Research regarding family caregivers suggests normalization as a model for coping with negative emotional outcomes in caring for a person with dementia (PWD). The study aims to explore whether normalization coping mechanism exists among formal caregivers, reveal differences in its application among cross-cultural caregivers, and examine how this coping mechanism may be related to implementing person-centered care for PWDs. Method: Content analysis of interviews with 20 formal caregivers from three cultural groups (Jews born in Israel [JI], Arabs born in Israel [AI], Russian immigrants [RI]), attending to PWDs. Results: We extracted five normalization modes, revealing AI caregivers had substantially more utterances of normalization expressions than their colleagues. Discussion: The normalization modes most commonly expressed by AI caregivers relate to the personhood of PWDs. These normalization modes may enhance formal caregivers’ ability to employ person-centered care.

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Family Involvement in Nursing Homes: Are Family Caregivers Getting What They Want?

Journal of Applied Gerontology ◽

10.1177/0733464815602109 ◽

2015 ◽

Vol 36 (8) ◽

pp. 993-1015 ◽

Cited By ~ 13

Author(s):

R. Colin Reid ◽

Neena L. Chappell

Keyword(s):

Nursing Home ◽

Family Caregivers ◽

Family Involvement ◽

Family Caregiver ◽

Nursing Home Residents ◽

Future Research ◽

Canadian Study ◽

Person Centered Care ◽

Centered Care ◽

Caregiver Involvement

The provision of person-centered care for nursing home residents with dementia suggests the need for family caregiver involvement. In this article, we argue that optimal family involvement differs by family caregiver and therefore depends on the degree to which family caregivers consider their own involvement to be important. In this Canadian study, we compare the importance that 135 family caregivers of residents with dementia place on 20 kinds of involvement with the degree to which they perceive opportunities for involvement. Family Involvement Congruence Scores are calculated in three ways: those for whom involvement is important, those for whom involvement is not important, and an overall congruence score. Congruence scores varied by involvement type. These scores show promise for use in future research on family caregiver involvement and as tools for use by facilities as they endeavor to meet family caregiver expectations for involvement.

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Servicing the Senior Swallow: A Family-Centered Private Practice Model of Service Delivery

Perspectives of the ASHA Special Interest Groups ◽

10.1044/2020_persp-20-00134 ◽

2020 ◽

pp. 1-4 ◽

Cited By ~ 1

Author(s):

Yvette M. McCoy

Keyword(s):

Older Adults ◽

Medical Model ◽

Recovery Process ◽

Swallowing Disorders ◽

Current Evidence ◽

Care Needs ◽

Skilled Nursing ◽

Person Centered Care ◽

Centered Care ◽

Traditional Medical Model

Purpose Person-centered care shifts the focus of treatment away from the traditional medical model and moves toward personal choice and autonomy for people receiving health services. Older adults remain a priority for person-centered care because they are more likely to have complex care needs than younger individuals. Even more specifically, the assessment and treatment of swallowing disorders are often thought of in terms of setting-specific (i.e., acute care, skilled nursing, home health, etc.), but the management of dysphagia in older adults should be considered as a continuum of care from the intensive care unit to the outpatient multidisciplinary clinic. In order to establish a framework for the management of swallowing in older adults, clinicians must work collaboratively with a multidisciplinary team using current evidence to guide clinical practice. Private practitioners must think critically not only about the interplay between the components of the evidence-based practice treatment triad but also about the broader impact of dysphagia on caregivers and families. The physical health and quality of life of both the caregiver and the person receiving care are interdependent. Conclusion Effective treatment includes consideration of not only the patient but also others, as caregivers play an important role in the recovery process of the patient with swallowing disorders.

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