Dementia Alliance International (DAI) continues with our series of blogs and news as part of our Dementia Awareness Month activities, and today, we are pleased to announce our newly adopted membership criteria.
When DAI launched on 1 January 2014, our membership criteria explicitly stated that to qualify for membership, the applicant needed to have a medically confirmed diagnosis of any type of dementia, which excluded members with a diagnosis of Mild Cognitive Impairment (MCI).
As with all health conditions, research changes things such as the diagostic criteria for a condition, as well as the clinical practice guidelines. Over a period of more than five years, the board and membership has discussed changing this criteria, and after much consideration, and years of reviewing it with dementia experts, academics and clinicians, we have finally moved to update a By Laws in line with the latest in terms of a diagnosis of dementa, as well as to increase inclusion.
Many experts had previously advised DAI that MCI does not always lead to dementia (some still say, as few as 20%), and hence this group did not meet the original DAI membership criteria. However, others had recommended DAI should have allowed their membership regardless of this, as no-one else is providing support for people in the diagnostic process or with MCI. We always wanteded DAI to be of, by and for people with dmentia, and also to ensure that people without dementia were not able to take over, as had happened to other self-advocacy groups.
Our motto is still, "Nothing about us, without us".
On September 14/15, 2021, the DAI board unanimously voted to change ARTICLE II - MEMBERSHIP Section 1 of our By Laws to the following:
ARTICLE II - MEMBERSHIP Section 1 of the DAI By Laws now says:
Section 1 – Eligibility for membership: Request for membership shall be open to any person living with dementia that supports the Vision and Mission of the organization.
Membership of Dementia Alliance International is free and is open and exclusive to anyone with a medical diagnosis of any type of dementia - Mild or Major Neurodegenerative Disorder.
Membership is granted after the completion and receipt of the electronically submitted on-line request or a written membership request provided to an active member.
Membership may be denied or revoked at any time if it is determined that an individual presents potential risk to others in the organization or to the overall health and wellbeing of the organization itself and the people it serves.
This includes but is not limited to breaches of the member Code of Conduct, and physical and mental hazards such as violence, anxiety and relived trauma [this may include revoking or denying membership of registered sex offenders]. A majority vote of the Board is required for denial or revocation of membership.
Read or download the updated By Laws here.
Bobby Redman, who has recently resigned as a board member and as the Vice Chair of DAI for various reasons, including to take on a national role in another organisation, recently provided the DAI board with the following background and some context to assist us to make this decision.
Background to proposed review
Dementia, as a diagnosis is no longer recognised in the DSM-5, which is the diagnostic manual generally used in the USA, Australia, and New Zealand (the UK use the ICD-10). The official term is now Major or Mild Neurocognitive Disorder (ND) and is therefore a stages approach which would previously have been called early-stage dementia / late-stage dementia.
The term mild cognitive impairment (MCI) that is thrown around by doctors is not a diagnosis, but rather a symptom, think of it like pain, which is a symptom rather than a condition. People may experience some cognitive loss (mild cognitive impairment), but it is only as further deterioration occurs, that it meets criteria for mild or major ND.
The problem is many people sit with a diagnosis of MCI for years, because too many doctors fail to recognise the difference between MCI and Mild ND, often using the term interchangeably.
If cognition continues to slip, and functioning is declining, it meets the criteria for MILD Neurocognitive Disorder, which then naturally progresses to Major ND over variable lengths of time. There is no Moderate ND and the only difference between Mild and Major ND is the severity of symptoms and the level of impact on independence in everyday activities, which as we all know should be on a sliding scale. We all experience good and bad days – some foggy, some a bit clearer; some days when we can complete activities better than other. Only a few of our DAI members would meet the criteria for Major ND, which would mean that we would be unable to function independently. Most of us whilst not meeting these criteria still require some support or strategies to be able to complete some everyday tasks; we would at this stage be diagnosed with Mild ND, with a specifier such as Alzheimer’s Disease; Frontotemporal lobar degeneration (FTD), due to multiple aetiologies (what we know as Mixed Dementia); Unspecified (what too many people sit with) etc.