Proposal to Alzheimers's Disease International (ADI) - June 2001

Alzheimer's Disease International (ADI)

A NEW STRATEGIC FRAMEWORK TO ADDRESS THE NEEDS OF PEOPLE
WITH DEMENTIA AND THEIR CARE-PARTNERS

A new paradigm for the development of ADI's strategies,
based on the stages of all the diseases that cause dementia.

The dominant paradigm for Alzheimer's Associations around the world to date has been the provision of support for care-partners of people in the moderate to late stages of Alzheimer's Disease.

Now that diagnosis is occurring earlier, and anti-dementia drugs are available to retain function for longer, people with early stage dementia are themselves also seeking information, advice and support from local Alzheimer's Associations. However, current strategies tend to be more focused on the later stages of care, when it is the care-partner who needs the most support.

Diagnosis is also becoming more sophisticated, and people are being diagnosed with a range of dementias, not necessarily Alzheimer’s Disease. They may not seek help from the Alzheimer's Association, as the terminology appears to exclude them from its services. As the true cause of a dementia - whether Alzheimer's Disease or something else - is not known until autopsy, the use of the word Alzheimer's for ADI and its member bodies should be more inclusive.

A new paradigm is emerging in some Alzheimer's Associations, towards recognizing that strategies for help can be developed to address all the stages of all the diseases that cause dementia. Such strategies provide help both to people with dementia and their care-partners as appropriate, depending on the need for care and information. Information and support is directed towards the needs of all dementias, recognizing that while Alzheimer's may currently be the most common, the Association's area of expertise extends to all dementias.

These Alzheimer's Associations regard themselves as being relevant to all people with dementia and their care-partners. They provide information and support as early as possible to people with dementia, recognizing the potential contribution they can make in a range of roles in the Association. They provide a range of support services to care-partners, acknowledging both their increasing need for assistance in the later stages of dementia, as well as their expertise that can be drawn upon by involvement in Association activities.

The new ADI Charter of Principles needs to be upheld

We applaud the new ADI Charter of Principles for the 'care of people with dementia and for the support of their family members and carers'. However, these principles should be for the 'support and care of people with all forms of dementia and their care-partners and professionals'.

People with dementia do not often need care at the moment of diagnosis, but they do need support and information about anti-dementia drugs and planning for the future. Care-partners initially need information and then require increasing levels of support.

Also the name of ADI is inconsistent with the Charter, as it has the appearance of excluding dementias other than Alzheimer's Disease.

Principle 2 is to be applauded:

'a person with dementia continues to be a person of worth and human dignity,
and deserves the same respect as any other human being.'

Contrast this laudable Principle with the statement on page 1 of the ADI Annual Report (1999/2000), on page 1, says that :

'all the ordinary pleasures of life … are no longer possible' for the person with dementia. Further, 'The mind is absent and the body is left as an empty shell.'

This bald statement strips people with dementia of both respect and dignity. Clearly, people with dementia are not seen as functioning, useful people. If ADI were to adopt a new paradigm for its strategies, then Principle 2 could become a reality and such appalling statements would never again be made. People with dementia would be treated with respect from the moment of diagnosis, as they struggle to live with the diseases that cause dementia.

Principle 5 is also to be applauded:

'people with dementia should as far as possible participate in decisions affecting their daily lives and future care.'

Therefore people with dementia should be involved in the management and leadership of ADI, because it has a large impact in decisions affecting the lives of people with dementia. However, this is not yet the case.

The vital question of competence

To date, people with dementia have been regarded as incompetent to serve in responsible capacities. This is implicit in their exclusion from active participation in the policy, program and advocacy work of bodies concerned with dementia or in the management and decision-making of such bodies.

The question of competence is a vital one in regard to upholding Principle 5. The moment of diagnosis cannot be assumed to be the moment at which a person loses competence. ADI has a responsibility to lay the basis on which people with dementia can be full partners in commitment to the objectives of the organization.

The DSM-IV definition of dementia does not refer to any such incompetence:

'The essential feature of a dementia is the development of multiple cognitive deficits that include memory impairment and at least one of the following cognitive disturbances: aphasia, apraxia, agnosia, or a disturbance in executive functioning. The cognitive deficits must be sufficiently sever to cause impairment in occupational or social functioning and must represent a decline from a previously higher level of functioning.'

Note that neither impairment in abstract thinking and judgment, nor inability to participate in decision making activities, are a feature of dementia. Indeed, it could be argued that a person who had functioned at a previously very high level might, in the presence of early dementia, still be able to participate fully in decision making, strategic thinking, etc.

Such people with dementia may also be able to contribute sound and original thinking, through writing or other slower forms of communication, and should therefore be regarded as being valuable participants in ADI. People with dementia should accept for their part the obligation to participate for as long as they feel it is reasonable to do so.

Some approach to competence needs to be agreed upon, and this is an urgent area for study. ADI needs to make a considered decision in regard to inclusion or exclusion of people with dementia in the range of its activities.

Today's people with dementia are unlikely to accept the label 'incompetent'.

The characteristic of dementia is that in most cases the people with dementia will eventually lose the capacity to make intelligent decisions. It is hardly strange that 'hospice in slow motion' has been the dominant paradigm. Care-partners will be relied upon to provide increasing levels of care, and they in turn will seek increasing levels of support from ADI and its member organizations.

However, there is now a growing group of people with early-stage dementia who claim the right to full participation in their communities, and seek recognition by organizations that have been set up for the 'care of people with dementia and for the support of their family members and carers'. These people with early-stage dementia are a constituency equal in dignity to donors, care-partners and researchers. Such people with early-stage dementia are active in international and national debates in dementia, and have their own international web-based organization, the Dementia Advocacy and Support Network (DASNI - www.dasninternational.org).

It is also worth noting that people with dementia being diagnosed today have memories of the sixties when Martin Luther King and his movement showed the world how one could act like a first-class person even if stigmatized as biologically inferior and a second-class citizen. For them, people with dementia are being stigmatized as biologically inferior, and unlike previous generations, these people with dementia are questioning the reasoning behind such assumptions.

Also, rehabilitative interventions are being developed and used by these people with dementia. As they continue to challenge their brains, they are able to continue, despite the progression of the disease.

People with dementia look to ADI for recognition and inclusion

People with dementia have high regard for their care-partners, and recognize their commitment to providing care. People with dementia seek to ensure that their care-partners receive ongoing support from Alzheimer's Associations around the world. In the early stages, where possible, people with dementia seek to do what they can to help to achieve this by being included in Association activities.

People with a diagnosis of dementia are often tragically and irrevocably cut off from former ways of participating both in the world of work and the world of relationships, and may face a dark and stigmatized future. Thus they may be come vulnerable to low self-esteem, if not to clinical depression, which leads to excess disability and a vicious circle of decline.

In order to rebuild their lives and to regain self-esteem, people with early-stage dementia need recognition and inclusion, opportunities to network and contribute. They look to ADI to provide international leadership in upholding its new Charter of Principles.

Australian and Canadian Alzheimer's Associations provide world leadership

The Australian Alzheimer's Association offers recognition and inclusion to people with dementia, and can serve as a model. In March, two people with dementia were invited to give a Plenary presentation at the Biennial National Conference. This presentation was enthusiastically received, and the speakers were treated with respect and honour.

The Australian Consumer Focus Group consists of people with early-stage dementia from around Australia, who provide input on policies and programs, drawing on their unique expertise from living with dementia. The Focus Group is also represented on the National Programs Steering Committee. Members of the Group share their perspective with professionals, care-partners, and the media (for example on national commercial and public broadcast TV, and radio networks). A number of Australian people with dementia will also participate in the ADI Conference in New Zealand, giving talks as part of the Australian Showcase, as well as a plenary address.

There are early stage support groups for people with dementia around Australia, as part of a developing nationally co-ordinated program. Australian people with dementia are included on the Board and on Advocacy Groups of State Associations, and all State Associations are developing approaches to policy and advocacy committees for people with dementia and their care-partners.

The National Association is currently planning a study of how to strengthen patient organizations around the world, addressing legal and medical issues in order to establish advocacy mechanisms for people with dementia and their care-partners, and the necessary structures and linkages.

Internet communication is often vitally important to people with dementia, for their abilities to drive and to orally communicate may be limited, and yet they are geographically scattered. The Alzheimer's Association Australia provides a welcoming dementia-friendly web-site, offering clear information, ability to contact other people with dementia by email or in chat-rooms and an invitation to contact the Convenor of the Focus Group.

The Alzheimer's Society of Canada also shows genuine concern for welcoming and including people with dementia and helping them network with each other, and has an attractive, dementia-friendly web-site.

The Alzheimer Society of Canada is considering appointing a person with dementia to its Board, and its National, Provincial and some Regional Associations are being very receptive to people with dementia. Three people with dementia were keynote speakers at the National Conference, and people with dementia have been featured in the national media. People with dementia are being actively encouraged to speak at forthcoming conferences, and are also being invited to facilitate early stage support groups

There are some early stage support groups around Canada

DASN and ADI

DASN, which evolved from another e-mail community list established by Laura Smith of Montana USA, now includes Members with dementia ranging in age from 24 to 74, living in the USA, Canada, Australia, New Zealand, the UK and Brazil. DASN has been a powerful catalyst in focusing attention on the needs, and contribution., of people with early stage dementia. DASN applauds ADI's invitation to people with dementia to participate in the forthcoming Annual Conference in Christchurch New Zealand. DASN looks forward to participating fully in Plenary Sessions, Workshops and Poster displays.

This participation by people with dementia is an important, and warmly welcomed, first step toward including people with dementia in the life of ADI and its Member Associations.

Recommendations

DASN puts forward three recommendations to ADI which encourage the recognition and inclusion of people diagnosed with all the diseases that cause dementia:

1. The name ADI to be inclusive of all dementias

The acronym ADI should be retained, but consideration be given to making this inclusive of all dementias, for example by giving it the name Associations for Dementia International, or Alzheimer's & Dementia International, or All Dementias International.

2. ADI to provide support to people with dementia and their care-partners

ADI should adopt a new paradigm for developing strategies for support and care, based on the journey from diagnosis to death.

a) ADI and its member organizations should provide support groups, counseling, and networking opportunities for people with dementia in the early stages of dementia, as well as for their care-partners.

b) Alzheimer's associations with web-sites should include a section which is designed for people with dementia, as well as one for their care-partners, which contain appropriate advice and information and networking facilities.

c) Alzheimer's associations should compile and disseminate information about, as well as sponsor research on, counseling and rehabilitation which can maximize the quality of life of people with dementia. Research should be participatory, where people with dementia if possible are partners in the enterprise.

3. ADI to recognize and include people with dementia

In accord with ADI Charter Principle number 5, as well as number 2, ADI and its member organizations should make provision for people with dementia, as well as their care-partners, to contribute to the range of activities including policy, program, conferences and advocacy and to participate in management and advisory structures.

a) Every national Alzheimer's association, as well as ADI itself, should ensure that all staff are responsible for welcoming people with dementia, receiving input from them, and helping to optimize services for them. Where possible, designated staff (including people with dementia) should perform these functions.

b) ADI should urgently determine the policy basis on which people with dementia can be full partners in the life of the organization including contributing to activities and participating in management and advisory functions.

Draft Resolution

The Conference requests the Executive Committee to:

a) Consult Member Associations on implementation of the above recommendations in relation to fuller involvement of people with dementia in the life and activities of the ADI and Member Associations; and

b) put forward appropriate recommendations for adoption by the ADI Conference in Caracas Venezuela in 2002.

Mr Phil Hardt
President
DASN

Dear Mr Hardt,

I met with Christine Bryden last week to discuss the DASN proposal for ADI. I am writing to thank you formally on behalf of ADI for the proposal and to let you know how we plan to proceed.

We will circulate the proposal to all ADI members and executive committee in advance of our New Zealand conference in October. It is during the conference that we have our executive committee and council meetings. The council is made up of one representative of each ADI full member country and is the overall governing body of ADI.

We will include the proposal as an agenda item on our executive and council meetings, there will not be sufficient time to discuss this in detail this year, but we wish to set up a working group of ADI members, to consult and prepare recommendations in response to your proposal for the ADI council to consider during our annual conference in Barcelona, October 2002.

We hope that we will be able to arrange a meeting with representatives of DASN and ADI during the NZ conference to discuss the way forward in more detail. As yet we have not identified members of the working group or a convenor, but we will do so and we can discuss this further in NZ.

I am looking forward to meeting members of DASN in NZ and working together towards encouraging members and ADI to be more inclusive of people with dementia.

Best wishes

Yours sincerely,

Elizabeth Rimmer
Executive Director
Alzheimer's Disease International
45/46 Lower Marsh, London SE1 7RG

ADI's 17th international conference will be in Christchurch, New Zealand
25-27 October 2001. http://www.conference.canterbury.ac.nz/alzheimer2001/

Mr Phil Hardt
President, DASN International

Dear Mr Hardt,

I am writing further to my letter of 5 July formally thanking you for the DASN International proposal for ADI on developing a more inclusive relationship with people with dementia. We have circulated your proposal to ADI members for discussion at our executive and council meetings in Christchurch, New Zealand later this month.

Pending the agreement of council, we now wish to establish a working group to discuss the ideas contained in the proposal and to make recommendations at the next ADI Conference in October 2002. We invite DASN International to nominate two people to be members of this group. Remaining members will be representatives from ADI executive and member countries. The convenor of the group will be Verna Schofield, New Zealand.

The first meeting of the working group is planned for 12:30 pm on Friday 26 October at Christchurch. Communication thereafter will be by email, fax, letter or telephone. Members of DASN International and of ADI will be widely consulted during the process of developing recommendations.

We hope that this arrangement is acceptable to DASN International so that this important working group can get underway in Christchurch. A draft terms of reference for the group is attached for your information.

Could you please advise your agreement, with an indication of the two members DASN International are likely to nominate. I look forward to hearing from you.

Best wishes.

Yours sincerely

Elizabeth Rimmer
Executive Director, Alzheimer's Disease International