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      Family caregivers of people with dementia Translated title: Familiares que cuidan a personas con demencia Translated title: Les aidants familiaux des patients atteints de démence

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      , MD; DSc; FRACP; FRANZCP * , BA-Psychology (Rons); Grad'DipProf Ethics
      Dialogues in Clinical Neuroscience
      Les Laboratoires Servier
      caregiver, family caregiver, intervention, Alzheimer's disease, dementia, institutionalization, burden, psychological strain

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          Abstract

          Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.

          Translated abstract

          Los familiares que cuidan a personas con demencia, a menudo denominados los segundos pacientes invisibles, son determinantes para la calidad de vida de quienes reciben dichos cuidados. Las consecuencias para el familiar cuidador, aunque en ocasiones son positivas, en general resultan negativas; hay una alta frecuencia de carga y morbilidad psicológica, como también aislamiento social, enfermedades fisicas y restricciones económicas. Se pueden identificar los cuidadores que serán vulnerables a los efectos adversos, como también los factores que reducen o aumentan la carga y la tensión. Se ha demostrado que las intervenciones psicosociales reducen la carga y la depresión, y retrasan el ingreso a residencias especializadas en el cuidado de estos pacientes. El manejo integral de los pacientes con demencia incluye la asociación entre los profesionales de la salud y los familiares cuidadores, la derivación a agrupaciones de pacientes con Enfermedad de Alzheimer y las intervenciones psicosociales cuando éstas estén indicadas.

          Translated abstract

          Souvent appelé « les seconds patients invisibles », les aidants familiaux, qui s'occupent des patients atteints de démence sont essentiels à leur qualité de vie. Les conséquences de la maladie sur cet entourage sont parfois positives mais généralement négatives avec une charge et une morbidité psychologique élevées, un isolement social, une altération physique et des difficultés financières. Il est possible d'identifier les aidants qui seront vulnérables de même que les facteurs qui améliorent ou aggravent leur charge et leur stress. Il existe des interventions psychosociales susceptibles de diminuer la charge et la dépression des aidants familiaux et de retarder l'admission du patient en institution spécialisée. La prise en charge globale du patient atteint de démence demande une collaboration entre les professionnels de santé et les aidants familiaux, une orientation vers les associations de patients atteints de la maladie d'Alzheimer et des interventions psychosociales lorsqu'elles sont indiquées.

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          Most cited references176

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          Stress, Appraisal, and Coping

          <p><b>The reissue of a classic work, now with a foreword by Daniel Goleman!</b><p>Here is a monumental work that continues in the tradition pioneered by co-author Richard Lazarus in his classic book <i>Psychological Stress and the Coping Process</i>. Dr. Lazarus and his collaborator, Dr. Susan Folkman, present here a detailed theory of psychological stress, building on the concepts of cognitive appraisal and coping which have become major themes of theory and investigation.</p> <p>As an integrative theoretical analysis, this volume pulls together two decades of research and thought on issues in behavioral medicine, emotion, stress management, treatment, and life span development. A selective review of the most pertinent literature is included in each chapter. The total reference listing for the book extends to 60 pages.</p> <p>This work is necessarily multidisciplinary, reflecting the many dimensions of stress-related problems and their situation within a complex social context. While the emphasis is on psychological aspects of stress, the book is oriented towards professionals in various disciplines, as well as advanced students and educated laypersons. The intended audience ranges from psychiatrists, clinical psychologists, nurses, and social workers to sociologists, anthropologists, medical researchers, and physiologists.</p>
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            Social relationships and health.

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              Global prevalence of dementia: a Delphi consensus study.

              100 years after the first description, Alzheimer's disease is one of the most disabling and burdensome health conditions worldwide. We used the Delphi consensus method to determine dementia prevalence for each world region. 12 international experts were provided with a systematic review of published studies on dementia and were asked to provide prevalence estimates for every WHO world region, for men and women combined, in 5-year age bands from 60 to 84 years, and for those aged 85 years and older. UN population estimates and projections were used to estimate numbers of people with dementia in 2001, 2020, and 2040. We estimated incidence rates from prevalence, remission, and mortality. Evidence from well-planned, representative epidemiological surveys is scarce in many regions. We estimate that 24.3 million people have dementia today, with 4.6 million new cases of dementia every year (one new case every 7 seconds). The number of people affected will double every 20 years to 81.1 million by 2040. Most people with dementia live in developing countries (60% in 2001, rising to 71% by 2040). Rates of increase are not uniform; numbers in developed countries are forecast to increase by 100% between 2001 and 2040, but by more than 300% in India, China, and their south Asian and western Pacific neighbours. We believe that the detailed estimates in this paper constitute the best currently available basis for policymaking, planning, and allocation of health and welfare resources.
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                Author and article information

                Contributors
                Primary Dementia Collaborative Research Centre and School of Psychiatry, University of New South Wales, Sydney, Australia; Academic Department for Old Aged Psychiatry, Prince of Wales Hospital, Sydney, Australia
                Academic Department for Old Aged Psychiatry, Prince of Wales Hospital, Sydney, Australia
                Journal
                Dialogues Clin Neurosci
                Dialogues Clin Neurosci
                Dialogues in Clinical Neuroscience
                Les Laboratoires Servier (France )
                1294-8322
                1958-5969
                June 2009
                : 11
                : 2
                : 217-228
                Affiliations
                Primary Dementia Collaborative Research Centre and School of Psychiatry, University of New South Wales, Sydney, Australia; Academic Department for Old Aged Psychiatry, Prince of Wales Hospital, Sydney, Australia
                Academic Department for Old Aged Psychiatry, Prince of Wales Hospital, Sydney, Australia
                Author notes
                Article
                10.31887/DCNS.2009.11.2/hbrodaty
                3181916
                19585957
                81bb0316-6411-409d-a80b-23165d095e13
                Copyright: © 2009 LLS

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by-nc-nd/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                Categories
                Clinical Research

                Neurosciences
                psychological strain,family caregiver,dementia,institutionalization,intervention,burden,alzheimer's disease,caregiver

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