Separate and Unequal: A Time to Reimagine Dementia

2021 ◽  
pp. 1-5
Author(s):  
Pia Kontos ◽  
Mary L. Radnofsky ◽  
Phyllis Fehr ◽  
Mike R. Belleville ◽  
Frances Bottenberg ◽  
...  
Keyword(s):  
Long Term Care ◽  
Care Homes ◽  
Centralized Control ◽  
Term Care ◽  
The Arts ◽  
People With Dementia ◽  
Health And Social Care ◽  
Separate And Unequal ◽  
Residential Long Term Care

The rapid emergence of COVID-19 has had far-reaching effects across all sectors of health and social care, but none more so than for residential long-term care homes. Mortality rates of older people with dementia in residential long-term care homes have been exponentially higher than the general public. Morbidity rates are also higher in these homes with the effects of government-imposed COVID-19 public health directives (e.g., strict social distancing), which have led most residential long-term care homes to adopt strict “no visitor” and lockdown policies out of concern for their residents’ physical safety. This tragic toll of the COVID-19 pandemic highlights profound stigma-related inequities. Societal assumptions that people living with dementia have no purpose or meaning and perpetuate a deep and pernicious fear of, and disregard for, persons with dementia. This has enabled discriminatory practices such as segregation and confinement to residential long-term care settings that are sorely understaffed and lack a supportive, relational, and enriching environment. With a sense of moral urgency to address this crisis, we forged alliances across the globe to form “Reimagining Dementia: A Creative Coalition for Justice. ” We are committed to shifting the culture of dementia care from centralized control, safety, isolation, and punitive interventions to a culture of inclusion, creativity, justice, and respect. Drawing on the emancipatory power of the imagination with the arts (e.g., theatre, improvisation, music), and grounded in authentic partnerships with persons living with dementia, we aim to advance this culture shift through education, advocacy, and innovation at every level of society.

scholarly journals Factors Affecting the Implementation, Use, and Adoption of Real-Time Location System Technology for Persons Living With Cognitive Disabilities in Long-term Care Homes: Systematic Review

10.2196/22831 ◽  
2021 ◽  
Vol 23 (1) ◽  
pp. e22831
Author(s):  
Alisa Grigorovich ◽  
Yalinie Kulandaivelu ◽  
Kristine Newman ◽  
Andria Bianchi ◽  
Shehroz S Khan ◽  
...  
Keyword(s):  
Systematic Review ◽  
Real Time ◽  
Long Term Care ◽  
Cognitive Disabilities ◽  
Care Homes ◽  
Care Providers ◽  
Term Care ◽  
Barriers To Implementation ◽  
Residential Long Term Care

Background As the aging population continues to grow, the number of adults living with dementia or other cognitive disabilities in residential long-term care homes is expected to increase. Technologies such as real-time locating systems (RTLS) are being investigated for their potential to improve the health and safety of residents and the quality of care and efficiency of long-term care facilities. Objective The aim of this study is to identify factors that affect the implementation, adoption, and use of RTLS for use with persons living with dementia or other cognitive disabilities in long-term care homes. Methods We conducted a systematic review of the peer-reviewed English language literature indexed in MEDLINE, Embase, PsycINFO, and CINAHL from inception up to and including May 5, 2020. Search strategies included keywords and subject headings related to cognitive disability, residential long-term care settings, and RTLS. Study characteristics, methodologies, and data were extracted and analyzed using constant comparative techniques. Results A total of 12 publications were included in the review. Most studies were conducted in the Netherlands (7/12, 58%) and used a descriptive qualitative study design. We identified 3 themes from our analysis of the studies: barriers to implementation, enablers of implementation, and agency and context. Barriers to implementation included lack of motivation for engagement; technology ecosystem and infrastructure challenges; and myths, stories, and shared understanding. Enablers of implementation included understanding local workflows, policies, and technologies; usability and user-centered design; communication with providers; and establishing policies, frameworks, governance, and evaluation. Agency and context were examined from the perspective of residents, family members, care providers, and the long-term care organizations. Conclusions There is a striking lack of evidence to justify the use of RTLS to improve the lives of residents and care providers in long-term care settings. More research related to RTLS use with cognitively impaired residents is required; this research should include longitudinal evaluation of end-to-end implementations that are developed using scientific theory and rigorous analysis of the functionality, efficiency, and effectiveness of these systems. Future research is required on the ethics of monitoring residents using RTLS and its impact on the privacy of residents and health care workers.

scholarly journals LEADERSHIP IN LONG-TERM CARE HOMES FOR PEOPLE WITH DEMENTIA

2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 187-187
Author(s):  
C Heijkants ◽  
B Bowers
Keyword(s):  
Long Term Care ◽  
Care Homes ◽  
Term Care ◽  
People With Dementia

scholarly journals Critical Contextual Elements in Facilitating and Achieving Success with a Person-Centred Care Intervention to Support Antipsychotic Deprescribing for Older People in Long-Term Care

2018 ◽  
Vol 2018 ◽  
pp. 1-12 ◽  
Author(s):  
Lynn Chenoweth ◽  
Tiffany Jessop ◽  
Fleur Harrison ◽  
Monica Cations ◽  
Janet Cook ◽  
...  
Keyword(s):  
Older People ◽  
Long Term Care ◽  
Direct Care ◽  
Care Staff ◽  
Care Homes ◽  
Term Care ◽  
Train The Trainer ◽  
People With Dementia ◽  
Contextual Elements

Antipsychotic and other tranquilising medicines are prescribed to help care staff manages behaviour in one-quarter of older people living in Australian long-term care homes. While these medicines pose significant health risks, particularly for people with dementia, reliance on their use occurs when staff are not educated to respond to resident behaviour using nonpharmacological approaches. The Halting Antipsychotic use in Long-Term care (HALT) single-arm study was undertaken to address this issue with 139 people 60 years and over with behaviours of concern for staff living in 24 care homes. A train-the-trainer approach delivered person-centred care education and support for 22 HALT (nurse) champions and 135 direct care staff, dementia management education for visiting general practitioners (GP) and pharmacists, use of an individualised deprescribing protocol for residents, and awareness-raising for the resident’s family. The HALT champions completed open-ended questionnaires and semistructured interviews to identify the contextual elements they considered most critical to facilitating, educating care staff, and achieving success with the study intervention. They reported that person-centred approaches helped care staff to respond proactively to resident behaviours in the absence of antipsychotic medicines; the champions considered that this required strong managerial support, champion empowerment to lead change, reeducation of care staff, and the cooperation of families and GPs.

The need for effective assessment and management of pain among older people in care homes

2003 ◽  
Vol 13 (4) ◽  
pp. 335-341 ◽  
Author(s):  
David T Cowan ◽  
Julia D Roberts ◽  
Joanne M Fitzpatrick ◽  
Alison E While
Keyword(s):  
Older People ◽  
Long Term Care ◽  
Financial Burden ◽  
Functional Independence ◽  
Care Homes ◽  
Public Health Issue ◽  
Term Care ◽  
Health And Social Care ◽  
The Uk

The increasing number of older people requiring interventions for improved health and social care has been identified as a crucial challenge for the twenty-first century. The reported high prevalence of pain in older people in long-term care facilities has been described as a public health issue not only in the USA but also globally. Rather than merely extending life, the reduction of morbidity, ways of coping with disability, preventing incapacity, extending the quality of life and enhancing the functional independence of older people are identified as important components of service provision. In Britain, the number of people aged over 65 years has doubled in the last 70 years and the number of people over 90 years is expected to double in the next 25 years, which will increase the need for health care in the future. Estimates for the UK indicate that approximately 445 800 older people are currently resident in care homes. The UK government has recently pledged to provide high-quality care and treatment for this population, to treat older people with respect and dignity and to allocate fair resources for conditions that affect them, while simultaneously easing the financial burden of long-term care.

scholarly journals Factors Affecting the Implementation, Use, and Adoption of Real-Time Location System Technology for Persons Living With Cognitive Disabilities in Long-term Care Homes: Systematic Review (Preprint)

2020 ◽  
Author(s):  
Alisa Grigorovich ◽  
Yalinie Kulandaivelu ◽  
Kristine Newman ◽  
Andria Bianchi ◽  
Shehroz S Khan ◽  
...  
Keyword(s):  
Systematic Review ◽  
Real Time ◽  
Long Term Care ◽  
Cognitive Disabilities ◽  
Care Homes ◽  
Care Providers ◽  
Term Care ◽  
Barriers To Implementation ◽  
Residential Long Term Care

BACKGROUND As the aging population continues to grow, the number of adults living with dementia or other cognitive disabilities in residential long-term care homes is expected to increase. Technologies such as real-time locating systems (RTLS) are being investigated for their potential to improve the health and safety of residents and the quality of care and efficiency of long-term care facilities. OBJECTIVE The aim of this study is to identify factors that affect the implementation, adoption, and use of RTLS for use with persons living with dementia or other cognitive disabilities in long-term care homes. METHODS We conducted a systematic review of the peer-reviewed English language literature indexed in MEDLINE, Embase, PsycINFO, and CINAHL from inception up to and including May 5, 2020. Search strategies included keywords and subject headings related to cognitive disability, residential long-term care settings, and RTLS. Study characteristics, methodologies, and data were extracted and analyzed using constant comparative techniques. RESULTS A total of 12 publications were included in the review. Most studies were conducted in the Netherlands (7/12, 58%) and used a descriptive qualitative study design. We identified 3 themes from our analysis of the studies: barriers to implementation, enablers of implementation, and agency and context. Barriers to implementation included lack of motivation for engagement; technology ecosystem and infrastructure challenges; and myths, stories, and shared understanding. Enablers of implementation included understanding local workflows, policies, and technologies; usability and user-centered design; communication with providers; and establishing policies, frameworks, governance, and evaluation. Agency and context were examined from the perspective of residents, family members, care providers, and the long-term care organizations. CONCLUSIONS There is a striking lack of evidence to justify the use of RTLS to improve the lives of residents and care providers in long-term care settings. More research related to RTLS use with cognitively impaired residents is required; this research should include longitudinal evaluation of end-to-end implementations that are developed using scientific theory and rigorous analysis of the functionality, efficiency, and effectiveness of these systems. Future research is required on the ethics of monitoring residents using RTLS and its impact on the privacy of residents and health care workers. CLINICALTRIAL

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