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      Higher Prevalence of Dementia but No Change in Total Comfort While Dying among Nursing Home Residents with Dementia between 2010 and 2015: Results from Two Retrospective Epidemiological Studies

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          Abstract

          Important policy developments in dementia and palliative care in nursing homes between 2010 and 2015 in Flanders, Belgium might have influenced which people die in nursing homes and how they die. We aimed to examine differences between 2010 and 2015 in the prevalence and characteristics of residents with dementia in nursing homes in Flanders, and their palliative care service use and comfort in the last week of life. We used two retrospective epidemiological studies, including 198 residents in 2010 and 183 in 2015, who died with dementia in representative samples of nursing homes in Flanders. We found a 15%-point increase in dementia prevalence ( p-value < 0.01), with a total of 11%-point decrease in severe to very severe cognitive impairment ( p = 0.04). Controlling for residents’ characteristics, in the last week of life, there was an increase in the use of pain assessment (+20%-point; p < 0.03) but no change in total comfort. The higher prevalence of dementia in nursing homes with no change in residents’ total comfort while dying emphasizes an urgent need to better support nursing homes in improving their capacities to provide timely and high-quality palliative care services to more residents dying with dementia.

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          Most cited references61

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          The Global Deterioration Scale for assessment of primary degenerative dementia.

          Cognitive decline associated with old age and consistent with the diagnosis of primary degenerative dementia is a unique clinical syndrome with characteristic phenomena and progression. The authors describe a Global Deterioration Scale for the assessment of primary degenerative dementia and delineation of its stages. The authors have used the Global Deterioration Scale successfully for more than 5 years and have validated it against behavioral, neuroanatomic, and neurophysiologic measures in patients with primary degenerative dementia.
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            White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care.

            Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. To define optimal palliative care in dementia. Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.
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              MDS Cognitive Performance Scale.

              Chronic cognitive impairment is a major problem in U.S. nursing homes, yet traditional assessment systems in most facilities included only limited information on cognitive status. Following the Congressional mandate in the Omnibus Reconciliation Act of 1987 (OBRA '87), U.S. nursing homes now complete the Minimum Data Set (MDS), a standardized, comprehensive assessment of each resident's functional, medical, psychosocial, and cognitive status. We designed a Cognitive Performance Scale (CPS) that uses MDS data to assign residents into easily understood cognitive performance categories. Information was drawn from three data sets, including two multistate data sets constructed for the Health Care Financing Administration. The prevalence and reliability of the MDS cognitive performance variables were established when assessed by trained nursing personnel. Five selected MDS items were combined to create the single, functionally meaningful seven-category hierarchical Cognitive Performance Scale. The CPS scale corresponded closely with scores generated by the Mini-Mental State Examination and the Test for Severe Impairment, nursing judgments of disorientation, and neurological diagnoses of Alzheimer's disease and other dementias. The new CPS provides a functional view of cognitive performance, using readily available MDS data. It should prove useful to clinicians and investigators using the MDS to determine a resident's cognitive assets.
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                Author and article information

                Contributors
                Role: Academic Editor
                Role: Academic Editor
                Role: Academic Editor
                Journal
                Int J Environ Res Public Health
                Int J Environ Res Public Health
                ijerph
                International Journal of Environmental Research and Public Health
                MDPI
                1661-7827
                1660-4601
                23 February 2021
                February 2021
                : 18
                : 4
                : 2160
                Affiliations
                [1 ]End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, 1090 Brussels, Belgium; tinne.smets@ 123456vub.be (T.S.); luc.deliens@ 123456vub.be (L.D.); lieve.van.den.block@ 123456vub.be (L.V.d.B.)
                [2 ]Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), 1090 Brussels, Belgium
                [3 ]Department of Geriatric Medicine, Ghent University Hospital, 9000 Ghent, Belgium; nele.vandennoortgate@ 123456uzgent.be
                [4 ]Department of Public Health and Primary Care, Ghent University Hospital, 9000 Ghent, Belgium
                Author notes
                [* ]Correspondence: rose.miranda@ 123456vub.be
                Author information
                https://orcid.org/0000-0001-6580-6548
                https://orcid.org/0000-0001-5546-5380
                Article
                ijerph-18-02160
                10.3390/ijerph18042160
                7926426
                33672123
                be3dd783-dcfb-4a64-a624-acc476b5304f
                © 2021 by the authors.

                Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license ( http://creativecommons.org/licenses/by/4.0/).

                History
                : 30 December 2020
                : 18 February 2021
                Categories
                Article

                Public health
                long-term care,care homes,nursing homes,dementia,quality improvement,palliative care
                Public health
                long-term care, care homes, nursing homes, dementia, quality improvement, palliative care

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