Athens Association of Alzheimer Disease and Related Disorders (AAADRD)

Why was this example implemented?

The increasing incidence and prevalence of Alzheimer’s disease with the ageing of the Greek population, together with the lack of formal policy and practice in LTC provision particularly for this condition, led to various initiatives by the NGO sector to address the specific problems of Alzheimer’s patients and their families.

AAADRD was developed to address the full spectrum of problems arising from the disease and to offer continuity of care, by linking the formal and informal care sectors in a holistic approach to the management of Alzheimer’s patients and their families and to bridge the gap between medical practice and the complex and multi-sectorial problems of everyday care of patients.

It also attempts to compensate for the gaps in the primary care sector in Greece through facilitating and creating the necessary links and pathways for patients throughout the health care system by using experienced professionals and developing new support services e.g. day care centres, respite care, training of carers, carers’ support groups and bereavement counselling, addressing the needs of both patients and their informal family carers.

Description

AAADRD is a non-profit organization founded by relatives of patients with Alzheimer’s disease, physicians and related health and social care professionals. It is run by a managerial board of seven members, including both health care professionals and family carers, and a scientific team of eight members, who are elected every three years.

The Association’s approach is to address the full spectrum of Alzheimer’s disease through programmes including: the early diagnosis of dementia by professionals; the promotion of research; the development of Day Care and short and long term Residential Care Units; the provision of useful information and advice (helpline) on dementia problems (caring, legal or financial issues); the presentation of lectures by health professionals and informal carers, covering all aspects of Alzheimer’s Disease; the development of professional seminars throughout the year; public information campaigns to increase awareness of the problems and social needs of the population affected. All services are supported by an extensive network of volunteers.

Specific services are provided by:

• three Dementia Day Care Centres, financially supported by European Social Funding (3rd Community Support Framework (70%)) and the Greek Ministry of Health (30%)
• a Home Care programme, funded exclusively through membership fees, donations and sponsorships.

Day care offers people with dementia the opportunity to socialise and helps them to maintain independence and enjoy a better quality of life.  A multidisciplinary team of healthcare professionals provides a comprehensive array of services, including memory clinic, non-pharmacological treatments for patients (cognitive training, speech and occupational therapy, reminiscence therapy, art therapy, physical exercise) as well as training, counselling and psychotherapy for carers. Additionally, information, advice and support is offered to those affected and their families, through the provision of mutual help in order to reduce the social, economic and emotional cost deriving from the long term care of people suffering from dementia. 

What are/were the effects?

Figures from one dementia centre (in Pagrati) show the following:

• During the four years of its operation, 2,000 people have attended the memory clinic.
• On a monthly basis: 105 people with dementia attended the non-pharmacological support programme and 64 family carers; 120 memory clinic visits were made and 15 psycho-educational sessions were run; 4 students participated as part of their practical training; and 280 helpline calls were received.
• The Home-care programme serves 80 older people and 70 family carers monthly.
• The 2-month informative and training programme for volunteers, has trained 150 people until now (health care professionals, caregivers, people with mild dementia etc).

In collaboration with the City of Athens, cognitive training groups for healthy older people are run by psychologists in the Municipal ‘Friendship Clubs’, with education on memory function, ways of dealing with memory problems and memory training. From July 2008 to December 2010, 1,800 older people from 24 ‘Friendship Clubs’ participated; following the intervention, the vast majority of the participants reported significant improvement in day-to-day memory functioning. Currently, 10 cognitive training groups of 6 to 12 older people per group (105 participants in total) are being run in sessions of 60-90 minutes. 

Since February 2009, the Association has launched the ‘Greek Alzheimer’s Initiative, a signature-collection campaign, designed as the first step towards a National Action Plan against Alzheimer’s disease. These signatures are symbolically presented to the Mayor of Athens after the Memory Walk, a highly publicised walk that takes place through central Athens each September to commemorate World Alzheimer’s Day, with the slogan ‘Dealing with Alzheimer’s disease step-by-step.

As a result of these continuous efforts and achievements, the Municipality of Maroussi created its own Alzheimer’s Day Centre, in December 2010, with health professionals and running costs paid by the municipality and the scientific supervision and responsibility undertaken by AAADRD.  

What are the strengths and limitations?

Strengths

• The AAADRD attempts in a unique way to address the multi-sectoral needs of Alzheimer’s patients and their families. The close collaboration between the formal care sector, patients and their informal caregivers, is an example of the “hand-in-hand” approach identified in Phase 1 of the INTERLINKS project, as a major factor contributing to good long term care.

Weaknesses

• Funding of the activities, programmes and services run by all the member organisations is insecurely supported by the state and therefore highly dependent on the abilities of each to raise their own funds. The issue of the necessary and permanent commitment of public funding for running essential NGO services for Alzheimer’s patients and their families has not yet been effectively resolved.

Opportunities

• The numbers of Alzheimer’s patients are predicted to continue to rise over the coming decades, making their informal and formal care an urgent concern for civil society. The local initiative of Maroussi Municipality may act as an example for other municipalities to follow.

Threats

• The impact of the current financial crisis is likely to be seen in increasing numbers of patients and their families unable to pay for private care at home or in Residential Care Units, with a higher burden on informal carers reflected in more Alzheimer’s patients “abandoned” and dependent on inadequate public LTC services (there are indications that this is already happening) and a higher demand for NGO services.

Credits

Links to other INTERLINKS practice examples

• Dementia Guidelines and informal carers
• Governing the building process of care innovation for Alzheimer patients and their families: the MAIA national pilot project
• ICT solutions and new health technology facilitating integration in home care
• Meeting centres for people with dementia and their informal caregiver(s)
• ‘We Care’ – Representative body of informal carers, relatives and friends in Germany

External Links and References

• Greek Association of Alzheimer’s Disease and Related Disorders 
• Efthymiou, P. Sakka, A. Harila (2010) Effectiveness of stress management program for Greek caregivers of patients attending a dementia day care center: a pilot study. 25th International Conference of Alzheimer’s Disease International, March 10-13, 2010, Thessaloniki, Greece.
• E. Tryfonopoulos, V. Konstantinidis, A.Efthymiou, N. Karpathiou, E.Dimakopoulou, C. Nikolaou, P. Sakka (2010) Effect of a multi-component rehabilitation program on cognitive functions of MCI patients in a Dementia Day Care Centre. 25th International Conference of Alzheimer’s Disease International, March 10-13, 2010, Thessaloniki, Greece.
• A.Efthymiou, N. Karpathiou, E.Dimakopoulou, C. Nikolaou, P. Sakka (2009) Evaluating results of a 6 month INTERVENTION program in a dementia day care center. Alzheimer’s Association 2009 International Conference on Alzheimer’s Disease (ICAD), July 11-16, 2009.
• E. Margioti, G. Zoi, A. Vlaxogianni, P. Sakka & K. Nikolaou (2009) Home Care Program for people with dementia. 6th Panhellenic Conference on Alzheimer’s Disease and Related Disorders, 20-22 Febr 2009, Salonica, Greece.
• Participation of AAADRD in Projects for the improvement of Quality of Life of people with dementia and their families: 2010- ALCOVE Joint Action On Alzheimer's Disease And Other Dementias
• GRUNDTVIG (2009-2011) Life after Care 
• LEONARDO DA VINCI (2009-2011) Continuous education of health professionals in dementia
• PSP-ICT Long-lasting Memories (LLM) 
• PSP-ICT Intelligent System for Independent Living and Self care of seniors with cognitive problems of Mild Dementia (ISISEMD)
• PSP-ICT Smart Home for elderly people  (HOPE)