Tag Archives: Kate Swaffer: Editor and Co-chair

Open members Meeting Notes: June 2015

Screen Shot 2015-10-28 at 6.54.05 amDuring the week, we held our first Open Members Meeting, with about ten members present. Due to some IT challenges, it was a difficult meeting for us all to hear each other, and I kept being cut off, so as the host, it was less than perfect!

Although this open members meeting it is a change from the system we first started in 2014 where we had open Board meetings, I truly believe it will give our members a better chance of having your say, and will impact more positively on the way you want DAI to exist. The method of being part of the Board meeting, with no real voice, and no voting rights, for many, did not allow you to have a voice at all, because, as with all groups, there are those with stronger voices who sometimes speak at the cost of others. That is never intentional, and may also happen in this forum, but we are really hoping we can give you a stronger voice. If it does not work out to be a better system, we will review it with you, as we will always work towards improving our methods and services.

We welcomed everyone and thanked them for making the time to join us. I cannot easily express how important it is and how much it means personally to me that members made the effort to attend this meeting, because after all, we are only existing because of our desire to support and advocate for people with dementia.

DAI needs your voice.

I had wanted to start with power point slides but the iPad I was limited to using did not support this, or, I did not know how to work that on an iPad!!!

We went over the meeting guidelines and protocols,  and did not record the meeting, so I hope we can manage to report it here now! If I fail in this, we may need to record it next time. To those of you present, please let me know.

The main guidelines or protocol for the meeting is that we do not interrupt someone when they are speaking, and we ask members to please indicate when they wish to speak, rather than talk over someone else. Nothing complicated at all.

As there had been some significant news since the Board meeting was I held, I began the meeting with a newsflash.

Newsflash

Since the last Board meeting, we have had two people resign from the Board. Janet Ford (nee Pitts) resigned for personal reasons, and Sid Yidowitch resigned mainly due to changes in his health.

Representing the DAI membership and Board, I would like to thank them both for their incredible passion and commitment to the group, especially Jan as a co-founder who has also been a co-chair for almost 18 months, and who represented us so well in Geneva in May. They have both worked hard and represented people with dementia well, advocating strongly for us all.

Updates from Board meetings:

May Board meeting

It was decided in May that in line with our DAI vision and mission, and with what it clearly states on our website and all documentation, that membership of DAI must be exclusive to people with a medically confirmed diagnosis of dementia, and we can not accept members without this, therefore MCI is not sufficient to be a member. This has meant we have lost at least one member, whom we will always welcome back if a diagnosis of dementia is ever confirmed. However, the rationale is that, we do not want DAI to be taken over by people without dementia as happened with DASNI. And for example, as MCI does not always lead onto a dementia, it is not appropriate therefore, to break the membership criteria.

Getting a medically confirmed diagnosis is incredibly difficult for almost everyone, and we realise there needs to be a support group set up to support this group, but it is not currently the mandate of DAI; we barely have funds to operate for members who have a confirmed dementia.

June Board Meeting

In June we held the first closed Board meeting, and we reported the following to members, directly from the minutes from that meeting;

1. ADI has agreed to make a donation to DAI of £1000, based partly on some donations made at the conference in Perth, and partly because I did not claim my speakers travel bursary allowance. This will ensure our running costs are covered for the year, allowing us to continue to fund the Zoom meetings, support groups and other events.

2. We had been asked to provide a work plan for the next fiscal year to ADI, and after much discussion agreed to start with the following:

Three publications:
• Consumer Empowerment
• Communicating with PWD
• I’ve just been diagnosed: What next?

We still need to determine conference attendances, but we believe ADI2017 and WHO meetings on dementia are a ‘must attend’ for as many members as we can find funding for.

3. Jan had reported on the WHO assembly she attended saying it was an excellent conference. One if the highlights meeting the Ambassador of the UN on human rights, and hearing about their focus on lower and middle class countries; language barriers discussed; Jan discussed DAI, past current and present. Speech went over well, very receptive re rehabilitation and individualised person centred plan to keep people in the community; in the same way as has happened in the disability sector.

4. I gave an update on members survey – it was decided 10 questions should be the limit, as more than that may be too difficult for us to complete, and also more than 10 would mean we had to pay a service fee. A few members trialled the draft survey I initially set up, and found it reasonably easy to do. Kate and John sent it to our members. Whilst the survey was not perfect, in part due to being limited to a FREE one, we have received feedback for a significant number of members, and after another 2-3 weeks, I will evaluate and report on it. It will be open a little longer, if you still wish to send in your thoughts.

5. DAI is a member of Global Alzheimer’s and Dementia Action Alliance, although there was nothing to update as we still do not have the minutes from the first face to face meeting held in Geneva in March. We are also a member of LEAD, although again there was little report.

Finally, we spoke about the Dementia Friends Canada campaign video 

Many who have seen this believe it has taken our advocacy efforts back 30 years, and that potentially it increases stigma, discrimination and FEAR. It stereotypes us indicating ALL people have the same symptoms, and focuses ONLY ON OUR DEFICITS.

If you haven’t seen it, and wish to send your feedback or comment in any way, here is the link.

In no way does it line up with ADI’s global charter of living well with dementia.

Some feedback we received said: “it should be a video to explain what the Dementia Friends initiative is and how one becomes a Dementia Friend and perhaps some examples of how someone in the community who is living with dementia might be assisted, not a video that, if I didn’t already know so many people with dementia, I’d be more afraid of someone with dementia than ever!!! The fact that all one has to do to become a “friend” is watch that dumb video is appalling.”

Many of us agree with these comments. The Board has also agreed to send a formal letter to Alzheimer’s Canada.

Please note: Since the open members meeting, I have had a conversation with their CEO who has explained their rationale for it.  That is not to say we will support it, but we do need to thoughtfully and properly respond. I did suggest our members could be a resource for Alzheimer’s Canada i the future, and hope we are taken up on this offer.

Members open discussion

After I was cut off from the meeting, Susan Grant hosted it it was a good discussion where everyone introduced themselves more personally, talking about how long diagnosed and of what their passion was in campaigning and how this could assist DAI.  Members present talked more about why they joined DAI and how they would like to contribute. Everyone was keen to share e mails and face book accounts.

The meeting finished around 22:40pm, and everyone appeared happy energised and ready to assist the DAI BOARD in any way they could.
Thank you for attending, and please, if you were not able to make this one, bring yourselves and your voice to the July Open Members meeting.
Kate Swaffer, Editor and Co-chair
Copyright: Dementia Alliance International 2015