Vienna Paper

This is the presentation given by Agnes Houston and Nancy MacAdam of the Scottish Dementia Working Group at the 2012 Alzheimer’s Europe Conference in Vienna.

 Good morning and thank you very much for attending our session today.

We have been part of the Scottish Dementia Working Group for the last 10 years and have campaigned on many different issues to improve the lot of people with dementia.

However, that has taken it’s toll on our emotional health and after working hard for so many years, many of us were feeling emotionally drained and depleted.  We were feeling very tired and just not managing our emotional challenges as well as we once did.  This was particularly true of members who had been with us for more than 5 years.

And so our presentation today tells you what we did about it!

After identifying the problem, we decided that we needed to tackle it and so we arranged a meeting for group members who had had their diagnosis for more than five years.  Twelve members attended that meeting which was led by Dr Dot Weaks, who is a co-opted member of our group and is a trained counsellor and specialist in dementia care. We identified our emotional challenges and struggles.

We then agreed to hold 3 meetings.  These meetings would be once per month over May, June and July and facilitated by Dr Weaks and another co-opted member, Liz Taylor, who was a trained mental health nurse and is now a PhD student at Edinburgh University.

These three meetings were with the sole purpose of exploring our emotions and the struggles we were experiencing.

The members all agreed to have the meetings recorded, and signed permissions, so that the content could be used to help inform this presentation and also could be used for training professionals and others.

Here are just some of the changes and challenges we were identifying in our first meeting, and as you can see, this is where the title of our presentation came from!

 These were different emotions that we had to deal with, compared to when we got our diagnosis, but they were nevertheless just as challenging for us, maybe even more so.

It was important for us that we knew and trusted the two group facilitators, both whom have been around the Scottish Dementia Working Group since it began.


Attendances varied from group to group, and all members were not able to attend every meeting.  3 members, including the two of us here today, attended every meeting.  Some of the members were away on holiday and some had other commitments, while others became ill over the course of the three months the meetings were run.

We christened ourselves the EMOTIONAL EXPLORERS!

The first of the three meetings started off with us setting our groundrules.  As you can see from the slide we knew exactly how we wanted to be treated!

We wanted respect, understanding, empathy and time for each other and an assurance that the content of these meetings would be confidential.

We needed to feel safe, with freedom to express our emotions and an assurance that we would not be judged.  We wanted to listen to each other and hear each other’s unique emotional stories.

However, as well as tears, we needed to make sure that we did not forget humour, and we laughed as much as we cried!

Our instruction to Dot and Liz was to be gentle with us.

As well as discussing how we wanted the meetings to be conducted, we also discussed what we would want to get out of these meetings both from a personal and group perspective.

We wanted help to live with these new emotional challenges while continuing to live with our old diagnosis of dementia.  We wanted to understand our emotions better and to build up our strength and resilience.  We wanted to deepen our friendships and bring each other help and healing.

We wanted to challenge the more traditional views of dementia and inform society and professionals that the picture they had of dementia was changing and we were the living proof.

Most of all we wanted to generate HOPE for one another and also for the people with the diagnosis coming after us that we could get through these most recent challenges.

We discovered that nobody talks about the bit in the middle.  There is a lot of focus on immediate post-diagnostic support and end of life care but not very much talk about the ‘bit in the middle’.


Our lack of understanding of our emotions was overwhelming us~we didn’t understand what was happening to us.  We were experiencing similar emotions to when we were diagnosed but not the same.  We had new fears, we couldn’t seem to pick ourselves up, we got angry at things we would not normally get upset about and we were always doubting ourselves and our own abilities.

We were also feeling guilty about still being articulate and able to campaign when many of our colleagues in the group had deteriorated and no longer able to participate in the group activities.

None of the text books had much written about what we were experiencing and once again we became pioneers!

Relationships can be a challenge at the best of times but when you add a diagnosis of dementia in to the mix it is even more challenging to maintain and manage our relationships.  Sometimes people walk away and sometimes we have to be the ones that walk away from relationships that are not healthy.  That is a very difficult thing to do and we continually grieve the loss of our old and meaningful relationships.

However, we have many new relationships as a consequence of our diagnosis and membership of SDWG, and that is a joy.  You may have seen the film Agnes and Nancy, well that is all about us and our new relationship formed as fellow travellers on our dementia journey.

Relationships are constantly changing, whether it has anything to do with the diagnosis or not and so it is always a good idea to review the relationships and let go of the ones not good for us, and celebrate the ones of value.

Dealing with the self, we found, was a major task!  Whether it was about questioning who we were, or doubting what we contributed, matters about our identity was central to these meetings.

Sometimes it is easy to blame and doubt ourselves, either because of low self-esteem or because of our diagnosis.

One of the important things we discussed was how we made meaning and explored what our purpose was in life.  Our spiritual self meant different things to different people and we all expressed our spirituality differently.

But there was no doubt that a diagnosis of dementia somehow gave the person the permission they needed just to be themselves!

 A new phrase was coined at the group which resonated with all of us.

An OVER-CARING meant that people took over tasks that we could still manage ourselves or sometimes we could continue if our ‘carer’ made modest adjustments rather than take over.

Spouses, always with the best of motivation, tended to take control and had a habit of saying NO!

We needed to acknowledge our limitations too and that was not always happening but in order to do that we needed to take personal responsibility rather than have it removed.

This could happen to people living on there own too, although perhaps less marked than if you were living within a family context.

Dementia is changing and we are experiencing living with that change, however the professional and public perception is still somewhat limited in comparison.

We feel very deflated when learned professionals challenge and undermine our diagnosis, believe me, we would gladly give it up!  But just because it we do not fit neatly into their ideas of what someone with dementia should be doing, they question it.  They do not see the struggle to continue with our daily lives.

We need to be challenging these ideas and perception and feel now that some of us baby-boomers have the diagnosis and have found a meaningful way to live with our dementia, that the perception should be beginning to change.  We do realise that attitudes take a long time to change, but we are offering a new perspective and a new understanding of what it means to have dementia in 2012.


These are some of the feelings that members of the group shared about being an emotional explorer meant to us.

It was a really positive experience and gave everyone in the group the opportunity to express how they were feeling about themselves and their situations.

It was great to be able to dump our excess baggage!

 It was really important for us to feel safe and have our emotions validated and affirmed.

It also deepened our friendships with one another and as a group.

It was scary sometimes to look inside ourselves, but we did it and yes, the answers were inside ourselves!

Over the time we spent together, it became really clear to us that it was really important to share what we had done as a group, not just for the conference in Vienna, but to a much wider audience.

We are often accused of not having real evidence for anything, as if our experience counts for little, so we have  instructed Dot and Liz to analyse what we have said in the groups, thus creating our own evidence, and write it up for publication so that academics and other professionals can read about our experience in their own language.

We hope as well as having benefitted greatly from being part of the emotional explorers that others will benefit from our experience in time.


Thank you for taking the time to come to our presentation today.  We hope you have enjoyed it and learned something along the way!