Basket | Login

 
 
 
 

Personal accounts

Diagnosis, post-diagnostic support


Tomaž Gržinič

  I used to take care of my father, who also had Alzheimer’s disease (AD), therefore the symptoms and cognitive decline were familiar; I was more aware of changes that appeared out of the blue.

Minor problems with memory and orientation convinced me that something was going on. For example, if I had to drive my car into unknown destinations or just parked a few blocks away, I was totally lost, frustrated and in distress. I really doubted that age would affect my functioning, so I decided to find an explanation for my change of behaviour.

My starting point was Spominčica-Alzheimer Slovenia. I arranged for a meeting with Štefanija L. Zlobec, president of Spominčica, who kindly invited me to an informative session. When I told my GP about changes that started to influence my daily routine, she immediately gave a green light for neurological consultation. I went through various diagnostic tests, which clarified that I might have Mild Cognitive Impairment (MCI) or mild dementia. However, the MRI scan surprisingly showed things were fine. In my heart I felt this could not be true. With my neurologist, I decided on a lumbar puncture which identified 2 or 3 biomarkers and I got the diagnosis of AD at my 64. The neurologist prescribed dementia medication, which I still use daily.

On one hand the time after diagnosis was a shock. But on the other hand I felt relief. I knew what is wrong with me, the fear was taken away and I was aware what dementia really meant. Since then, I planned everyday activities with a lot of enthusiasm. I still wanted to be the same as before, active and sociable.

I have wonderful friends. They accepted my small inconveniences as a normal part of my life. They pay a lot of attention to me, never leave me alone and always ensure I am safe, no matter where I am. They are friends everyone would wish for.

Since my diagnosis I have become very active at public campaigns about dementia in Slovenia. My story shows that people around you have less preconceptions if they know exactly what kind of disease you have. Hence it is important to say out loud that you have dementia, be part of groups (such as EWGPWD) and involved in European projects or clinical trials to share your feelings, thoughts and wishes about how you would like to be treated by others.

Tomaž Gržiničis  : President of the Slovenian Working Group of People with Dementia and member of the European Working Group of People with Dementia (EWGPWD).

This account has been translated by Alenka Virant, who supports Tomaž.


Scottish Dementia Working Group  

 

  The third Scottish National Dementia Strategy was launched in June 2017. It includes 21 commitments, all to be delivered by June 2020.

The Scottish Dementia Working Group (SDWG) was part of the ‘Dementia Dialogue’ events and were also represented on the National Expert Advisory Group in the development of this strategy, ensuring that the voices of those living with dementia are heard. The group also has regular meetings with the Minister for Mental Health where they provide feedback on issues raised by the general membership and local groups.

The SDWG wrote the foreword to the third strategy and has continued to monitor how dementia services have developed in line with the commitments of the previous two strategies. Two of the commitments in the strategy focus on post diagnostic support, which has been a priority of the SDWG for the last two years. The commitments mark a move towards a more flexible and person centred approach. This goes beyond the one year guarantee with the opportunity for those diagnosed early to be supported by a named Link Worker for longer than 12 months if necessary. The period of post diagnostic support will be flexible and open ended and led by the person with dementia and their carers. The strategy also commits to testing post diagnostic services in primary care settings in a number of locations.

These are ambitious changes which may take some time to deliver and get right but ultimately these commitments support SDWG’s vision of “effective and person centred support to enable people with dementia to live well and have choice and control over their future”.

 

Scottish Dementia Working Group : Carol Hargreaves is Vice-Chair of this group and sits on the European Working Group of People with Dementia (EWGPWD)

 

 
 

Last Updated: Friday 26 April 2019

 

 
  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
  • European Union
 
 

Options