Nikki's role is to lead on support in a variation of ways: meeting the needs of people living with a rare dementia, caring for a loved one or as a health professional, working with people with rare dementias. Her team provides one to one support, an online group support with a global audience and educational talks. They provide essential information sessions for the health and social care sector on the different types of rare dementia, symptoms, coping strategies and prognosis. They support over 2000 members and help provide knowledge and understanding in the family, communities and health care provision.

About the event

Nikki delivered an engaging and well received presentation on dementia at Lambeth College, to learners on the Level 4 Counselling Diploma course. This was a great opportunity for students to not only learn about dementia, but to understand the ins and outs of working with clients, which is an integral part of their course.

The presentation received positive responses from students, with many describing the talk as 'thought provoking', 'informative' and 'interesting'. 

Nikki Zimmermann's style was humorous, engaging and thought provoking. I thought she was rather delightful and had a lovely aura about her. The content of the presentation was just right I thought, enough detail to spark the interest but not too much. Just about the right length I thought. One thing that I remember particularly was about genetic counselling and the connection with some forms of dementia and other conditions such as motor neurone disease. As the gene can be inherited in a certain percentage of people and my mother died from motor neurone, and we now think her mother did too. Something for me to think about.

- Gideon

I found the presentation very interesting to understand the different types of rare dementia. It is a subject I was not familiar with and I found it very thorough and easy to understand at the same time. I really enjoyed the way the presentation was delivered, with a mixture of slides, images, YouTube clip, which kept me engaged throughout. Nikki kept my attention at all times with her presence, eloquence, humour and clear content.

- Caroline

I must say the presentation has opened up a lot for me and I have gained awareness of other types of dementia that I have never heard about before. I have learnt a lot and this has help me to look at ways in which I communicate and take care of my patients as a Health Care Assistant, what I was missing in their actions and or attitudes as sometimes they tend to behave out of the norm at one point or the other which tend to confuse us as workers because we are not educated on the wider basis as it relates to dementia. Since I have now learnt another level to Dementia I am aware of some signs to look out for and will be better able to communicate my concerns with my supervisor.

- Arlene

I enjoyed the dementia presentation. It is one of the most common reasons to mental health problems. It was focusing on rare and early onset specific illness rather than the general strains of dementia and alzheimers. It was both informative and interesting.

- Karin

Comprehensive, straight to the point and well presented topic. The PowerPoint presentation including the many videos/films plus the real lie example made it easy to understand the different types of rare and young onset of dementia. All in all, an excellent lecture which has opened my mind and heart to the suffering of dementia patients and their carers. I have gained so much knowledge during this 1hour presentation. Thank you very much.

- Anissa

The dementia presentation was done in a knowledgeable manner. I was really interested in the topic as it was researched and delivered well. It was creative, covering essential points and all unfamiliar terms explained. Good time given for interaction and questions. I loved the topic the presentation was very thought provoking.

- Althiea

Thank you for your great and informative presentation. I thoroughly enjoyed it. The information you provided would be useful in my future career.

- Mitra 

The workshop for rare dementia was fantastic for gaining knowledge and insights to better understand what it is. The reality that I may come into contact, either personally and/or professionally, with someone who is affected by RD or knows someone who is, raised my awareness around this subject. The presentation was helpful and beneficial, especially as a training counsellor; broadening my knowledge and understanding on RD enhances empathic understanding. The pace was good and covered a lot of relevant content in the duration of time. It was quite informative, and worthwhile led by an open speaker.

- Nese 

I found the presentation insightful and informative. I was aware of early onset dementia but understanding the different types and how the symptoms typically manifest through the person’s day to day life was interesting and sometimes hard to hear. The realisation that once the person and their families are giving this diagnosis their lives will never be the same but thankfully RDS are their to support and help both the individual and their families to manage and also express their fears and worries in a safe space. Keep on doing the great work that you are doing because it seems that there isn’t that much support in this field

- Virginia

The dementia presentation was very informative and insightful from a personal and professional perspective, I only had a very general and broad understanding of it. Professionally, learning about the different types of dementia and their distinct symptomatic presentations gave me a greater understanding of the wider array of difficulties and struggles that people with dementia and their families face. Similarly, it opened my eyes and perception to a completely different image of what a person with dementia might look like (not necessarily a very forgetful and lonely old woman/man). This realisation enabled to think about dementia in a completely different light.

Personally, I found thinking about the families and people with dementia painful and somewhat distressing, because I understand how neurological degenerative diseases change and transform family dynamics, roles and relationships. The entire time, I thought about dad and how Parkinson Disease changed him and us, it completely disrupted and shifted our relationship with him, our perception of him, our roles in the family and the dynamics within it. It was difficult to sit there and focus on the content whilst trying to contain all the emotions that were being triggered. The most difficult part of neurological degenerative diseases is losing the person you knew and starting to get to know and relate to this new person that is inhabiting the body of the person you once knew. Right now, I find myself having a double grief process with my dad whom I’ve lost once to Parkinson Disease and a second time permanently to death. In this sense, having a more robust understanding of dementia and the so similar experiences the families and patients may go through, gave me not only a stronger empathetic understanding but a personal connection to it. 

- Mariana

Thank you Nikki for delivering an enlightening presentation!