Uptake and effectiveness of a Dementia Risk Reduction Program in middle-aged descendants of demented people due to Alzheimer Disease or Vascular Dementia: a road map to healthy ageing

Late-life cognitive impairment and dementia are considered a major public health concern because of high prevalence rates and high economic and social burden. Increases in life expectancies worldwide will lead to an absolute increase in the number of people with dementia in the coming years. It is estimated that in 2020, around 450.000 Dutch people will suffer from dementia. In the Netherlands, dementia is one of the most expensive diseases. An average delay of two years in onset of Alzheimer’s disease (AD) could decrease the world-wide prevalence of AD by 22.8 million cases by the year 2050 which would subsequently lower the number of cases that need high level care and the associated costs. As no curative treatments for dementia are currently available, prevention is a key element to counteract the dementia epidemic. Recently, the World Health Organization and the G8 Dementia Summit identified dementia prevention as a major public health priority. Although dementia has established genetic components, one third of dementia cases worldwide are estimated to be attributable to seven modifiable factors (low education, midlife hypertension, midlife obesity, diabetes, physical inactivity, smoking, and depression), providing prevention opportunities. As a long time frame is needed to measure the effects of preventive interventions on cognitive decline and dementia, this study will focus on the dementia risk reduction, targeting modifiable lifestyle related risk factors. The general aim of this project is to investigate the uptake and effectiveness of a Dementia Risk Reduction Program (DRR-program) among adult-children of people with recently diagnosed Alzheimer Disease or vascular dementia at the memory clinic. The subsequent research questions are: 1. What is the uptake of the DRR-program among adult children of people with recently diagnosed Alzheimer Disease or vascular dementia at the memory clinic compared to the control group? a. What is the difference in uptake between an active and passive recruitment strategy? 2. What is the effect of the DRR-program among adult children of people with Alzheimer Disease or vascular dementia at the memory clinic compared to the control group on the individual modifiable behavior risk factors? Design: Cluster randomized controlled trial in the hospital’s memory clinics, using a pre-randomisation design. Memory clinics will be matched and pairwise randomizion will used. Memory clinics will either be allocated randomly to an active or passive approach to recruit individuals for the Dementia Risk Reduction Program. Study population Eligible study population consists of individuals (aged 40-70 years, living and functioning independently) with a biological parent who is recently (< 2 months) diagnosed with Vascular Dementia or Alzheimer Disease at the memory clinic. Individuals are excluded if they are suffering from major depression, dementia or substantial cognitive decline, or who are unable to perform digital tests or filling out a questionnaire using the computer. Intervention group The DRR-program consist of a risk assessment for developing dementia and a tailor-made computerized lifestyle advice for dementia risk reduction (i.e. increasing physical, cognitive and social activity, stop smoking, reducing cardiovascular risk factors including diabetes, treatment of depression). We will compare two recruitment strategies, a passive approach (using leaflets and posters in the waiting room of the memory clinic) and an active approach (a personal letter and face to face invitation of the medical specialist of the memory clinic to participate). Control group The control group consists of adults (> 40 years) participating in the LifeLines cohort study, a large (n > 167.000) population based cohort study in the Northern part of the Netherlands and having parents with dementia. The control group is not exposed to the dementia risk reduction program. Outcome measures Primary outcomes: change in individual modifiable behavior risk factors (smoking, physical activity, alcohol consumption, nutrition, social activity). Secondary outcomes include: (1) the percentage of high risk people completing the risk assessment, (2) a composite variable indicating whether participants have changed (beneficial) at least one of the modifiable risk factors for dementia: physical activity, smoking, nutrition, cognitive or social activity, (3) changes in beliefs and attitudes with regard to dementia risk reduction, (4) percentage participants that indicated that they have followed up the tailored computerized lifestyle advice. Sample size Taking into account cluster randomization (ICC 0.02) and a power of 80% (significance level of 0.025, two sides), we need 672 patients per group to demonstrate a difference of 4% in smoking behavior in the intervention group (from 25% to 20%) and the control group (from 25% to 24%). A total of 26 memory clinics will be recruited.