25 years of working with our allies

• Involving people with dementia and their carers
• The Stroud Symposia Series
• Alzheimer Europe
• World Health Organization

Involving people with dementia and their carers

'People tend to think the onset of dementia deprives you of everything, that you are lost. That's not true. I wanted to send the message that I am getting on with my life.' 73-year-old person with dementia, speaking during ADI's 20th annual International Conference in Kyoto, Japan, 2004

People with dementia are at the heart of ADI's mission and in 2001, encouraged by a visit from Christine Bryden from Australia, ADI set up a People with Dementia working group. Just two years later Christine became the first person with dementia elected onto ADI’s Board. The aim of the People with Dementia working group was to assess ways of including people with dementia in the decision-making and activities of ADI and its member associations. In 2002, a toolkit was sent out to each national association suggesting ways in which they could make this happen.

ADI’s 17th International Conference, held in New Zealand in 2001, became the first of many ADI conferences to offer a person with dementia the opportunity to share their experience with conference delegates. This highlighted to all in attendance the differences in cultural response to dementia and levels of dementia care and treatment across the world.

ADI’s International Conference in 2004 marked a real turning point for Japan. For the first time, Japanese people with dementia were given the opportunity to speak out about their experiences of living with the disease and this received a remarkable level of media coverage throughout the country. Twenty-one people with dementia participated in the event, which featured an interactive quiet room, a press conference led by a person with dementia and a workshop for ADI members about involving people with dementia.

Keith Turner from the UK, who was diagnosed with dementia in 2004, became the first person with dementia to speak at an Alzheimer University in 2007. Following this, Keith and his wife Lillian were invited to visit Alzheimer’s Jamaica who had participated in the training programme that year. In April 2008, Keith and Lillian returned for the final day of the Alzheimer University programme for emerging associations. They spoke to participants of the importance of including people with dementia in the work of Alzheimer associations and the necessity for support groups to be set up for both people with dementia and carers. For many, this was the first time they had heard a person with dementia speak in this capacity.

In 2009, Graham Browne from the UK was invited to attend the Alzheimer University. During the three-day event Graham shared his experience of living with Pick’s disease and took part in a question and answer session on the benefits of support groups for people with dementia.

ADI continues to involve people with dementia in their activities. In 2009, the process of reserving a seat on ADI’s Elected Board for a person with dementia was begun. Lynda Hogg, a person with dementia from Scotland was co-opted onto the Board. ADI also actively seeks funding to enable people with dementia to attend the annual International Conference in order to share their experiences with the rest of the dementia community.

The Stroud Symposia Series

The Stroud Symposia Series was developed as a collaborative effort between the Stroud Centre for the Study of Quality of Life, the Institute of Psychiatry and ADI. The purpose of the group was to collect a series of narrative insights from people with dementia and carers in order to understand quality of life in dementia.

The symposia became part of ADI’s International Conference in 2000, with Nori Graham, Honorary Vice President of ADI, Sube Banerjee of the Institute of Psychiatry, King’s College London, and Barry Gurland of the Stroud Centre for Quality of Life at Columbia University, running workshops each year inviting participants to discuss issues such as the nature of quality of life and the carer/person with dementia relationship.

The Stroud Symposia Series website was launched on 1 January 2005. The website was designed to make the growing pool of insights accessible to as many people as possible and allow information to flow directly from consumer to consumer.

The final Stroud Symposia Series workshop was run during ADI’s conference in 2009.

Alzheimer Europe

Alzheimer Europe was formed in September 1990 when representatives from six national Alzheimer associations across Europe met in Belgium to discuss the formation of a European presence to establish awareness of dementia with the European Council, Commission, Parliament and other national organisations. Representatives from the regional group planned to make personal contact with members of the European Parliament, keep them informed of the progress of Alzheimer Europe, and when appropriate, urge them to put forward and support proposals that would benefit people with dementia and their carers throughout the region.

Alzheimer Europe’s premises and facilities were provided in Brussels, Belgium, through its membership to the European Citizens Action Service, who existed to help strengthen the position of voluntary sector non-governmental organisations in relation to the European Council institutions. The offices have since moved to Luxembourg.

During the 17th conference of Alzheimer Europe held in May 2007, the Chairmen of ADI and Alzheimer Europe signed a partnership agreement between the two organisations to facilitate future collaboration.

World Health Organization

In 1990, ADI were invited by the World Health Organization (WHO) to participate in developing a statement for a position paper on mental health for the elderly. Just two years later, in September 1992, ADI entered into an Official Working Relationship with the WHO. The WHO understands the critical need for raising public awareness, promoting training and education, and providing services and support to people with dementia and their families. Finding ways to collaborate on these issues is continually being explored in ADI’s ongoing relationship with the WHO.

During the annual meeting of the ADI Council in 1993, Dr José Manoel Bertolote, Senior Medical Officer for the WHO and the Designated Technical Officer in the Official Working Relationship between ADI and the WHO, addressed those in attendance and reaffirmed the potential for raising worldwide dementia awareness and increasing support for families through the collaborative relationship.

Globally, ADI maintains an outreach programme and on-going effort to stimulate and encourage development of new Alzheimer associations. In 1993, ADI received a grant from the Helen Bader Foundation in support of Project Global Outreach. In its collaborative work with the WHO, the grant enabled ADI to support training of physicians from developing countries to diagnose, treat and care for people with dementia.

In 1994, ADI collaborated with the WHO on producing the Help for caregivers booklet, which is still widely used and is ADI’s most popular publication. In January 1996, during the 97th session of the WHO’s Executive Board, it was decided that ADI would be admitted into Official Relations with the WHO.

Representatives from ADI met with the WHO in January 1999 to discuss how they could collaborate further. Following this meeting, a message of support from Dr Gro Harlem Brundtland, the then Director General of the WHO, was sent for World Alzheimer’s Day 1999.

In 2000, ADI worked closely with the WHO to develop and evaluate services for people with dementia in the Dominican Republic, PR China, Russia and India. The WHO invited ADI to take part in both World Health Day and the World Health Assembly the following year. ADI delivered a statement during World Health Day on 7 April 2001 and were offered a stand to publicise the work of ADI and raise awareness of dementia during the World Health Assembly in May of that year.

In 2003, ADI were invited to participate in a WHO working group on mental health and, during ADI’s 2004 annual International Conference in Japan, the WHO and ADI set out the Kyoto Declaration, an action plan for dementia.

In October 2008, the WHO launched a Mental Health Global Action Plan (mhGAP). The plan described the gap between the needs and resources in all kinds of mental health, neurological and substance use disorders around the world. Following the launch of the plan, a committee was set up to work on evidence-based intervention packages. Martin Prince, coordinator of the 10/66 Dementia Research Group, and Daisy Acosta, Chairman of ADI, were chosen as members of the committee.

ADI continues to work alongside and maintain regular contact with the WHO in the mutually beneficial exchange of information and support.

Where next?

• 25 years of ADI
• 25 years of making it work