The Cuban Study of Aging and Dementia

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The Cuban Study of Aging and Dementia. Juan de J. Llibre Rodriguez, MD, PhD Cuban Alzheimer s Association Medical University of Habana REGIONAL CONFERENCE ON ALZHEIMER S DISEASE, BARBADOS 25th -27th 2016

Dementia Touches Us All Progressive cognitive & functional decline Caused by brain degeneration Many different causes Alzheimer s disease (AD) Parkinson s dementia Vascular Vitamin deficiency Many different treatments No cures

Dementia: Global public health threat WHO, 2012 More than 47 million people estimated to be living with dementia in 2015: numbers expected to double every 20 years Among them, 58% live in low- and middle-income countries this proportion projected to rise to 71% by 2050.

Dementia Prevalence 330 000 Caribbean live with Dementia In 2030 620,000 people in Caribean region will live with AD 1 in 4-6 seniors dies with AD or other dementia In 2010, cost of dementia in Caribe 2,98 billion USD. In 20 years, cost AD will double. Carer strain is a major problem, strongly associated with behavioural and psychological problems in the person with dementia Source: ADI, World Alzheimer Report 2010 12.13.2010 9

The developing countries context Dementia is a hidden problem Little awareness Not medicalised People do not seek help Unresponsive services High levels of caregiver strain

Population 11,3 millions Life expectancy 78,9 years Men 76,7 years Women 80,2 years Dementia s prevalence 8.2-10.2 % (160 000 cases ) Incidence rate 21.7 per 1000/year (28 760 new cases/year) Mortality rate 195.5 per 1000/year

Research Agenda The Cuban Study in Aging and Dementia Pilot studies (1999-2002) Development and validation of culture and education-fair dementia diagnosis Preliminary data on care arrangements Population surveys baseline phase (2003-2005) Prevalence of dementia and other chronic diseases Impact: disability, dependency, economic cost Access to services Nested RCT of Helping carers to care caregiver intervention Incidence phase (2008-2010) Incidence (dementia, stroke, mortality) Risk factors Course and outcome of dementia/ Mild Cognitive Impairment New prevalence wave. Intervention Programs (2016-2018)

The Cuban Disability and Alzheimer Study Playa Municipality, Havana & Santa Clara, Villa Clara Total Municipalities Population Studied Over 65 years old approximately 40 000 inhabitants

Cuban Study of Aging and Dementia 10/66 Protocol Door knocking Cognitive test Clinical interview Socio-demographic and risk factor interview Physical/ neurological examination Blood test Informant interview 10/66 Dementia diagnosis DSM IV Dementia DSM IV/ ICD10 Depression Esperanza Aged 104 years! The protocols for the 10/66 Dementia Research Group populationbased research programme. BMC Public Health 2007,7:165.

Prevalence of dementia according 10/66 and DSM IV criteria % 12 10 8 6 4 2 0 Puerto Rico Cuba DR Caracas Peru (urb) Peru (rur) Mexico (urb) Mexico (rur) China (urb) China (rur) India (urb) India (rur) DSMIV 1066 DSMIV Llibre Rodriguez J, Ferri Cleusa, Prince M, et al. Prevalence of dementia in Latin America, India, and China: a population-based cross-sectional survey. The Lancet, 2008; 372: 464

PREVALENCE OF DEMENTIA BY AGE Prevalence (%) 30 25 20 15 10 Cuba - 10/66 Cuba - DSM IV EURODEM 5 0 65-69 70-74 75-79 80+ Age (years) Llibre Rodríguez J.J, Valhuerdi A., Sanchez I.I., Guerra M.A, et al. The prevalence, correlates and impact of dementia in Cuba. Neuroepidemiology 2008.

Incidence of dementia. The 10/66 Cuban Study of Aging and Dementia. Dementia Incidence (per 1000 person years) Female 22.06 (18.46-26.36) Male 17.81 (13.50-23.01) ALL 21.7 (17.91 25.44) Martin Prince, et al. The Lancet, 2012

Disorders causing of dementia. 10/66 Cuban study. Other dementias 8.1 % Vascular dementia 17% Alzheimer s disease 69% Parkinson dementia 5.6 %

Estimated numbers of people with dementia 2015: 160 000 1.2 % of the population 2030: 273 000 2.7 % of the population Increased longevity without quality of life is an empty prize. Large increases in the numbers of care dependent older people are predictable and largely inevitable. Dementia is the single largest contributor to needs for care among older people.

Knowledge of risk factors or causes: Suggests ways of preventing disease through modification of risk factors Allows people at risk of a disease to be identified for purposes of preventive therapy

RISK FACTORS FOR INCIDENCE DEMENTIA (Cuba) (HR and 95 % CI Cox Regression) Risk factors Stroke 2.84 (1.20-6.72) * Older age, per 5 year group 1.79 (1.37-2.37) * ApoE e4 1.93 (1.03-3.81) * Hypertension in middle age 1.35 (1.02-2.37) * Protective associations Higher education per level 0.77 (0.67-0.98) * Skull circumference 0.81 (0.52 1.0) * Leg length 0.57 (0.49 0.78) * Animal naming verbal fluency 0.92 (0.89 0.95) * Sex, (men vs women) 0.79 (0.55 1.11)

What Can I Do? Protect against vascular disease Exercise Participate social networks Mental activity See your doctor

Does African Ancestry Protect Against Dementia? A Population Based Casecontrol Study Univ. de Ciencias Medicas - Habana, Matanzas Cuba Centro Nacional de Genetica, Institute of Psychiatry, Psychology & Neuroscience, King College London, UK Beatriz Marcheco Teruel, Juan J Llibre Rodríguez, Interactions between genetic admixture, ethnic identity, APOE genotype and dementia prevalence in an admixed Cuban sample; a cross-sectional population survey and nested case-control study. BMC Medical Genetics 2011,

National Plan, Objectives Increase promotion, information, education, and support for families, recognizing the role they play Developing dementia capable support services at all stages of the disease Focus efforts on prevention and early diagnosis both in the health sector and in society at large Assessing and improving the quality of health care, social care and long-term care support and services Implement Good Clinical Practice Guidelines for prevention and management of chronic diseases, with a community outreach component Increase availability of specialists in primary health care

The next steps New prevalence and incidence wave III (2016-2018) - What are the changes, over 10 years, in prevalence and social-patterning of chronic diseases (CDs) and underlying risk factors? Cardiovascular risk (BP/ smoking/ fasting glucose/ cholesterol) Diet (anaemia, B12, folate, subclinical hypothyrodism, albumin, anthropometry) APOE and other genetics factors Inflammatory and inmunosenescense markers Intervention! Implement and evaluate package of care for frail or dependent older people, including dementia Implement the National Plan

Conclusions The world is facing a new epidemic of unprecedented proportions Its effects will be felt particularly in low and middle income countries - currently least prepared to meet the challenge Societal costs will rise inexorably, driven by the increasing need for long term care Time for action Scalable models of evidence-based clinical care to close the treatment gap Progressive fiscal and social policy long-term care Prevention Continuous monitoring of key indicators