quality of life of alzheimer’s disease patients, caregivers and evaluating the effectiveness of thenonpharmacologicalinterventions

MINISTRY OF EDUCATION AND TRAINING MINISTRY OF HEALTH NATIONAL INSTITUTE OF EPIDEMIOLOGY AND HYGIENE -* - NGUYEN BICH NGOC QUALITY OF LIFE OF ALZHEIMER’S DISEASE PATIENTS, THEIR CAREGIVER AND EFFECTIVENESS ASSESSMENT OF SOME NON-PHARMACOLOGICAL INTERVENTIONS Specialization: Sociological Hygiene and Health Organization Code: 62.72.01.64 SUMMARY OF THE DOCTORAL DISSERTATION HA NOI – 2014 The work was completed in: National Institute of Epidemiology and Hygiene Thesis advisor: Ass.Prof Do Thi Khanh Hy PhD Nguyen Thi Thuy Duong Opponent 1: Ass.Prof Pham Van Thao, PhD (The Military Medical Institue) Opponent 2: Prof Nguyen Xuan Nghien (Bach Mai Hospital) Opponent 3: Ass.Prof Nguyen Cong Hoan (Hanoi Medical University) The thesis will defensed at National Institute of Epidemiology and Hygiene at , date month year 2014 Full dissertation could be found at: - National Library - The Library of National Institute of Epidemiology and Hygiene ACRONYM AD: Alzheimer’s Disease ADL: Activities of Daily Living DSM- IV- TR: Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision) GDS: Geriatric Depression Scale IADL: Instrumental Activities of Daily Living scale ICD-10: International Classification of Diseases, 10threvision MMSE: Mini Mental State Exam NINCDS-ADRDA: National Institute of Neurological and Communicative Disorders and Stroke - Alzheimer’s Disease and Related Disorders Association QOL: Quality of Life QOL-AD: Quality of Life–Alzheimer’s Disease NPI: NeuroPsychiatric Inventory NGH : National Geriatric Hospital WHO: World Health Organization ABSTRACT OF THE DISSERTATION Background   According to WHO (World Health Organization), global population is gradually ageing It is expected about 600 million people aged 60 years and older The number of the elderly is expected to double by 2025 and reached approximately billion in 2050 More than half of the world's elderly people live in Asia.Survey data on population change and family planning by GSO (General Statistics Office of Vietnam)on April 1st, 2012 showed the proportion of population aged 60 and older was 10.2% and the proportion of population over 65 was 7.1% Vietnam officially entered the period known as "aging population period".The time for Vietnam to change population structure from "aging" to "aged population" would be only about 20 years,much shorter than in many other countries Aging increased the risk of developing chronic and degenerative diseasesincluding dementia which Alzheimer’s disease accounts for 50-70% It was really a tragedy for the elderly not only because of the high incidence in this age group, but also due to diseases would affectmassive and long-lasting in all aspects of the patient, their family and society, also reduce the quality of life of patients and their caregivers.To ease these burden, in addition to epidemiological studies andpharmaceutical, non-pharmacological therapies, quality of life (QOL) and Alzheimer’spatient caring issues was being researched in many parts of the world.In Vietnam, dementia and Alzheimer’s disease was also begun to draw medical and social care attention A number of studies were conducted to find out the incidence, risk factors, screening criteria and diagnosis of dementia and Alzheimer’s disease in Vietnam However, the amount of research on this disease was still limited, mainly focusing on clinical studies, there was hardly any study focusing on the quality of life of Alzheimer’spatients, their caregivers and supporting therapies So, this study wasaimed to cover the following mandates: Describe the actual quality of life of Alzheimer’s patients being treated at the National Geriatric Hospitalfrom 1/2011 to 6/2013, with the caregiver’sburden andquality of life To assess the effectiveness of some non-pharmacological interventions to improve the quality of life of Alzheimer’s patients and their caregivers New contributions of the thesis: This dissertation was the first systematic study to have the actual quality of life of Alzheimer’s disease patients; caregiving burden and health related quality of life of their caregivers and to evaluate the effectiveness of a number of non-pharmacological interventions International assessment scales were translated and adapted toVietnamese and appliedsuccessfully to Vietnamese patients and their caregivers These tools would be applied to evaluate the quality of life of patients andcaregivers’ burden care in managing and caring Alzheimer’s patients programs.The thesis studied 120 Alzheimer’s patients having multiple logical, feelings and behavioral disorder symptoms, their quality of life was only about 50% compared to the good level and closely linked to many elements related to the condition of the disease The study achieved result in quantifying the quality of life of Alzheimer’s patients, the caregiver’s burden and quality of life and the factors involved The dissertation proved the remarkable effectiveness of nonpharmacological interventions for Alzheimer’s patients and their caregivers.Those applied in thesis were not only relatively simple andeasy to implement,but alsoeffective and able to widely applied in practice fortreating Alzheimer’sdisease patients and being as basisfor more extensive studies The results of this thesis gave new contributions for studies in the elderly especially on dementia and Alzheimer’s diseaseand contributed materials for policymaking on health care for the elderly in general and Alzheimer’s patients in Vietnam in particular Scientific and practical Significance of this thesis Scientific significance: The thesis used designed descriptive study through observation a series of case studies and applied intervention on control group then comparing before-afterin accordance with issues and study objectives Collecting information methods wereabundant and ensuring accuracy with the standard questionnaire which wastested and assessed internal reliability, concurrent use of multiple tools and assessment methods to increase test accuracy Practical significance: The results of the thesis provided evidence for the actual quality of life of Alzheimer’s patients,caregivers' burden and quality of life, the remarkable effectiveness of non-pharmacological interventionsto help health care planners and policymakers on the topic of Alzheimer’s patients, caregivers and the elderly and on applying intervention model for hospital network and in general community How the report is structured The study has 140 pages and chapters, including Introduction: pages, Chapter Overview: 31 pages, Chapter Subject and methodology: 27 pages, Chapter Findings: 40 pages, Chapter Discussion: 37 pages, Conclusion: pages, Recommendations: pages, 34 tables, charts, 2diagrams, image and 153 references, 17 in Vietnamese and 136 in English updating to 2013 The appendix includes: the diagnostic criteria for Alzheimer’s disease, research profile, questionnaires, exercises for patients and patients studied list CHAPTER OVERVIEW Dementia and Alzheimer’sdisease 1.1 Clinical syndrome of dementia and Alzheimer’sdisease - Syndrome of dementia WHO (World Health Organization)Dementia is a syndrome – usually of a chronic or progressive nature – in which there is deterioration in cognitive function (i.e the ability to process thought) beyond what might be expected from normal ageing It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement Consciousness is not affected The impairment in cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behavior, or motivation.Dementia is one of the major causes of disability and dependency among older people worldwide Dementia is caused by a variety of diseases and injuries that primarily or secondarily affect the brain, such as Alzheimer’s disease or stroke accounting for 50 to 70 percent and 20 to 30 percent respectively However, later researchers found that the overlap between the two types of dementia particularly in the oldest age group - Alzheimer’s disease It was first described by German psychiatrist and neuropathologistAlois Alzheimer in 1906 and was named after him.He was the first to describe the clinical and pathologic characteristics of disease included neurofibrillary tangles and amyloid plaque Alzheimer's disease was a neurodegenerative disease, indicated by memory loss, the most characteristic symptoms of disease and other cognitive disorders such as Aphasia, apraxia, agnosia, lost the ability to synthesize reasoning and dysfunction implementation, impaired ability to perform activities, accompanied by the behavioral changes which were important clinical manifestations such asdenial this disease, apathy, psychosis (delusions, hallucinations), mood disorders (depression, anxiety), agitation activities, seriously affecting professional and social of patients Patients’ condition got severe gradually and then not recoverable Diagnosis of Alzheimer Definitive diagnosis Alzheimer based on pathology Moderndigital image diagnosis that would be diagnostic aid to probable Alzheimer's disease cases such as MRI brain, PET scan and computed tomography single photon SPECT Alzheimer's disease was diagnosed clinically based on the criteria of DSM-IV-TR or ICD X or NINCDS-ADRDA 1.2 Current status of dementia and Alzheimer in the world and Vietnam 1.2.1 Current status of dementia and Alzheimer in the world The older you was, the more incidence of suffering dementia Just after every five years, the incidence of all dementia nearly doubled again, from 1.5% at age 60-69 to 40% at age 90 According to WHO, the number of people currently suffering dementia worldwidewere about 35.6 million people It was estimated to double by 2030 (65.7 million) and increased over three times in 2050 (115.4 million) Alzheimer's situation is similar to that 1.2.2 Current status of dementia and Alzheimer in Vietnam According to a study from the National Geriatric Hospitalin Ba Vi district, Hanoi (2005-2006) showed the percentage of people aged 60 years and older living in the community suffering dementia was 4.63%, the morbidity rate increased 1.78 times after every years In 2005, National Geriatric Hospital has established "Research Unit of Memory and Dementia" Research in Hanoi (2009 - 2010), the rate of dementia in ThanhXuan Commune -Soc Son was 5.1% of the elderly, in Phuong Mai Ward - Dong Da was 3.2% Dementiaand Alzheimer's disease situation in Vietnam are similar to other countries in the region Quality of life of Alzheimer’s patients and that of their caregivers 2.1 Quality of life of Alzheimer’s patients Quality of life should be considered as an important outlet to assess for trials in Alzheimer's disease There were many methods to assess the QOL of Alzheimer's patients': patients’self-evaluation, caregivers gave evaluation and direct observation on the behavior and activities related to the quality of life of patients Quality of life assessment in Alzheimer's disease (Quality of Life Alzheimer Disease / QOL-AD) was a broad set of tools, which structured including objective and subjective indicators of quality of life and was the most commonly used in research worldwide 2.2 The caregiver’s burden and quality of life Alzheimer's patients usually required a high level of caring Taking care of patients with Alzheimer's disease was more stressful than caring for people with physical disabilities Zarit BurdenInterview (ZBI) about caregivers’burden was the tool that was most commonly used in the world Caregivers’ heath related quality of life also reduced, especially mental health Non-pharmacological interventions So far, no medicine could cure Alzheimer's disease but only might slow disease progression and reduce some of the symptoms The nonpharmacological measures may improve cognitive function, daily activities, reduce mental disorders and slow the behavioral disabilities and patients’ needs of hospitalized thereby improving the quality of life of Alzheimer's patients and their caregivers CHAPTER METHOD The dissertation was carried out from January 1/2011 to January 6/2013 at the NationalGeriatricHospital Objective Describe the actual quality of life of diagnosed Alzheimer's patients at Geriatric Hospital from 1/2011 to 6/2013, and their caregivers’ burden and quality of life 1.1 Research Subjects 1.1.1 Alzheimer's Patients - Selection criteria: Patients with Alzheimer's was diagnosed according to DSM-IV-TR in NationalGeriatricHospital - Exclusion criteria: Having medical condition or heavy surgical, not to agree to participate in the study or the patient's family not to agree to participate 1.1.2 Caregivers - Selection criteria: only selecting one primary caregiver of patient with Alzheimer's disease to enroll in the study, aged 18 years and older, and able to communicate - Exclusion criteria: not knowing how to read and write, having sensory disabilities (deaf, blind), not to agree to participate in research 1.2 Study design: The study described through observation a series of cases 1.3 Sample sizes and sampling methods The total number of 120 patients diagnosed with Alzheimer's diease in the period from January 1/2011 to January 6/2013 at National GeriatricHospitaland 120 their primary caregivers ensuring the selection criteria Objective Assessing the effectiveness of several interventions non-pharmacological to improve Alzheimer's patients and their caregivers' quality of life 2.1 Research Subjects a Alzheimer's Patients - Selection criteria: Patients with mild to moderate stages of Alzheimer's (MMSE ≥ 10 points) were recruited in the observational study, agreed to participate - Exclusion criteria: Patients with Alzheimer's disease having MMSE