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Living with dementia

Friday 15 December 2017

Nina Balackova, member of the EWGPWD, reports on her involvement over the lasts months

I have been quite busy over the last months. I had the opportunity to meet the director of the Bulgarian Alzheimer Society in Sozopol and was able to provide some feedback to her about the work that I am doing at national and European level. Also, I have attended recently an international conference on dementia in Bratislava. I was very pleased to be invited as a speaker to this conference. My speech was about what it is like to live with dementia and the work I am carrying out as member of the EWGPWD. I found the conference very informative and I particularly enjoyed Prof. Alexander Kurz’s speech about non-pharmacological interventions for people with dementia. During the second day I attended a very inspiring workshop about brain training and stimulation. My husband, who came with me to the conference, attended a workshop about support for carers. I am grateful for this invitation. It is very useful and interesting to be able to participate in this type of event.

Helen Rochford-Brennan Chair of the EWGPWD promotes better care for people with dementia

I was recently invited by the National Dementia Office and Director of Nursing and Midwifery to take part in a training session of The Virtual Dementia Tour (VDT).The VDT is an interactive learning experience that takes place in a mobile simulated training unit. It aims at supporting carers of people with dementia to have greater understanding and empathy in their caring role of what it is like to live with a diagnosis. I found the experience very interesting especially in how it affected those taking part in the training. For a person with dementia it takes a lot of courage to do this training and it certainly is not for the faint hearted. I could also see first-hand that there is still a lack of training across the health service which I was happy to learn is now being addressed. I also have attended a national conference organised by the Social Work Special Interest Group in Ageing (SIGA) in Ireland. The conference was entitled “Promoting Excellence in Dementia Care” and was organised to provide multidisciplinary professional development for those who sought to promote excellence when supporting people living with dementia and their families.  I was honoured to be invited to provide the first keynote address. Part of the keynote was based on human rights. I also spoke about my own personal journey and the importance of diagnosis and post-diagnostic support. The latter was very important for the audience as social workers play a key role in providing information and coordinating supports for the person affected and their families at all stages of dementia.  I also spoke about my personal experience of receiving a diagnosis, the emotional impact of diagnosis on myself and my family, my experience accepting the diagnosis, the strategies I am using to live well and my current role acting as an advocate for others. I was told by the organisers that the feedback from the audience was very positive and reflected the value the audience placed on hearing the lived experience of a person living with dementia.

Good news from Idalina Aguiar about a new centre for people with dementia in Madeira

I would like to share with you some very exciting news from Madeira (Portugal). In November, the first adult day care centre in Madeira for people with dementia “Lugar de Memórias” was inaugurated. This centre has been opened thanks to the collaboration between different organisations including the Alzheimer Portugal’s Association in Madeira, the Funchal Community Development Association (Garouta do Calhau) and Madeira Social Security. The centre counts with several rooms which will provide therapeutic activities to people with dementia, as for example a Snoezelen room, which I have already tested! The centre is nicely equipped and its opening is very timely as this is the first adult centre for people with dementia in our community. 15 people with dementia will be able to participate in the activities of the centre. I was the first person to use this centre!  

Petri Lampinen talks about his experience of joining the EWGPWD in September

For about a year I followed the activities of Alzheimer Europe’s European Working Group of People with Dementia (EWGPWD). I was delighted that the Alzheimer Society of Finland agreed to nominate me and I was able to join the group in Berlin as a member from Finland. This meeting of the group coincided with Alzheimer Europe’s annual conference in Berlin. I was warmly welcomed by all members of the group and I felt immediately a sense of belonging. I enjoyed participating in the conference together with my wife, Nina .The days at the conference were busy and rich with experiences. The best part, however, was forging new ties. I was also able to share my idea for designing a digital whiteboard. The working group is like a big family and I am looking forward to all the things that we can achieve together. Curiosity, courage and positive thinking keep me going. This is a good starting point on our journey towards our common goals.