Community support programmes for people affected by dementia in Athens, Greece
- Ageing population with increasing prevalence of dementia.
- Limited scope of services available for patients with dementia and needs of informal caregivers largely unrecognized.
- Inadequate resources made available for dementia-related care.
- The nonprofit organization AAADRD opened four day care centres across Athens to directly provide support services to people affected by dementia. The organization also campaigned extensively to gain attention for their cause and pushed the government to develop a national dementia action plan.
- Highly motivated actors directly affected by dementia or working in related fields played an important role in identifying and understanding service delivery gaps.
- As a specialized organization, AAADRD was able to mobilize a large network of dedicated supporters. Connections established with similar organizations furthered advocacy efforts.
- Sustainability of the initiative relies on growing government commitment, securing resources for activities and successfully implementing the national dementia action plan.
Population ageing has contributed to increasing prevalence of dementia and Alzheimer’s disease in Greece. However, without a guiding national plan for dementia, the system was left struggling to respond to the growing disease burden. Furthermore, despite rising dementia-related care needs, austerity measures following the 2008 financial crisis restricted health and social care budgets. National health insurance only covered basic medical care for patients with dementia and services were considered too narrow in scope. Informal caregivers provided the majority of care, yet lacked the necessary support services to effectively fulfil their role.
After observing the unmet needs of patients with dementia and their caregivers, the Athens Association of Alzheimer’s Disease and Related Disorders (AAADRD) secured private operating funds (primarily from the European Commission) to open four day care centres across Athens to expand services for people affected by dementia. AAADRD centres employ a multidisciplinary staff including physicians, psychologists, speech therapists, social workers, nurses, physiotherapists and trained volunteers. Centres offer an array of free services such as neuropsychological assessments, cognitive training, physical activity interventions and nonpharmacological therapies such as speech, occupational and art therapies. AAADRD centres also organize various educational programmes and services for caregivers, including support groups, individual counselling and skills training. Alongside running the centres, AAADRD relentlessly lobbied the government to help ensure sustainability for their activities and increase national commitment to addressing dementia. Awareness raising activities have included, for example, signature collection campaigns and an annual Memory Walk through central Athens on World Alzheimer’s Day. With a national dementia action plan adopted by the government in 2014, AAADRD is hopeful that care for people affected by dementia will improve and government support for their day care centres will increase.
AAADRD is a nonprofit organization dedicated to dementia with approximately 4500 active members including patients, caregivers, health professionals and other dementia-related organizations. Under guidance from its multistakeholder governing board, AAADRD is responsible for the oversight and management of its four day care centres. Centres rely heavily on volunteers and good working relationships between professionals, volunteers and users of services help to ensure effective day-to-day running. More recently, both national and municipal governments have shown support for the initiative. The Ministry of Health currently funds 30% of AAADRD centre costs and municipal governments help support the running of AAADRD centres within their jurisdictions. Strong grassroots advocacy by AAADRD members was instrumental in persuading the national government to adopt a national dementia action plan and AAADRD representatives participated in the multistakeholder group charged with developing this plan.
Research conducted between 2007 and 2010 in the first day care centre opened by AAADRD provides information on the impact of the initiative. During this time, around 2000 people benefitted from neurological examination and neuropsychological assessment in memory clinics held by the centre and each month over 100 people with dementia (plus their caregivers) attended nonpharmacological support programmes. Home care services were also offered to 80 people with dementia. Feedback questionnaires showed positive patient experiences with centre services.
This case was prepared as part of a larger effort by the WHO Regional Office for Europe and published (2016) in the document, "Lessons from transforming health services delivery: Compendium of initiatives in the WHO European Region".
© Copyright World Health Organization (WHO), 2016
The methodology used for the development of this case is slightly different from the templates used on the IntegratedCare4People web platform, in particular in the analysis of enabling factors and barriers to change.
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Athens Association of Alzheimer’s Disease and Related Disorders