Q4. Have people living with dementia and informal carers received priority access to COVID-19 vaccination all throughout Europe? How can we overcome any remaining obstacles in terms of vaccine access and delivery for dementia patients and informal carers?
The vast majority of European countries have prioritised frontline healthcare workers, long-term care facility residents and the oldest people in the first phases of vaccination, with a smaller number also prioritising social care personnel and professional carers.
A small number of European countries, recognising dementia as a risk category for severe COVID-19, have prioritised people with dementia for COVID-19 vaccination. However, in the majority of countries, neither people with dementia, nor informal carers have been specifically identified as priority groups for the COVID-19 vaccination, despite their increased risk.
Alzheimer Europe recently published a position paper and briefing note on this matter, highlighting that people with dementia and their carers were at higher risk from developing serious complications from COVID-19, as well as having already experiencing a disproportionate impact as a result of the response to the pandemic. As such, Alzheimer Europe called on governments to prioritise people with dementia and their carers as part of their ongoing vaccination strategies.
Q5. How has the pandemic impacted Alzheimer’s associations and Alzheimer Europe itself? How have you been working with your member associations during the pandemic?
Our members have been severely impacted throughout the duration of this pandemic, with many seeing substantial falls in their fundraised income, with those who deliver services and support to people with dementia being forced to significantly change the way in which they work. A number of organisations have been forced to restructure their teams, as well as delivering support and services in a new way (e.g. online peer support meetings, online counselling etc.).
We have been impressed by the innovativeness of our members as they have strived to support people with dementia and their carers, moving support groups and other services online, as well as utilising their networks of supporters, volunteers and dementia friendly communities to ensure that the most vulnerable people with dementia and carers continued to receive some level of contact during the pandemic.
Alzheimer Europe has kept up its activities with members, moving the majority of our meetings online in 2020, ensuring that the European dementia movement continues to be connected throughout the pandemic, able to share knowledge, resources and information on an ongoing basis. Our members were very open to exchanging information on their activities and initiatives in an effort to learn from each other.
One challenge was moving our annual Alzheimer Europe Conference to a digital format, ensuring that stakeholders from across the world could share the latest knowledge and developments across policy, practice and academia. Despite being uncertain as to how this would work in practice, we were delighted with the overwhelmingly positive feedback we received. Due to the continued uncertainty about in person meetings, our 2021 conference will also take place online.
Q6. How is Alzheimer Europe engaging on European-level policy matters currently?
Alzheimer Europe has been fortunate to be able to continue its policy work throughout the duration of the pandemic, receiving permission from the EU health programme to reallocate some of our core funding to gather evidence and information about the impact of COVID-19 on people with dementia, their families and carers.
Alzheimer Europe’s policy work at the European level has continued to try and prioritise dementia, both within the policies of the European Union, whilst also engaging with international, European and national decision-makers.
In relation to the policy processes of the EU, Alzheimer Europe has been working on two main fronts:
- Trying to ensure dementia remains a policy priority as part of relevant programmes of work (e.g. EU4Health, Horizon Europe etc.)
- Working with the EU4Health Civil Society Alliance to ensure that the voices of patient organisations are heard in the development and implementation of the EU4Health programme and yearly work plans.
During the pandemic, Alzheimer Europe has continued to coordinate meetings of the European Group of Governmental Experts on Dementia, providing an opportunity for colleagues from national health ministries, the European Commission and the World Health Organization (WHO) to exchange the latest developments and expertise in relation to dementia, with these meetings inevitably focusing on COVID-19 and the specific responses of countries for people with dementia.
In addition, Alzheimer Europe recently held a meeting with Dr Hans Kluge, Regional Director for WHO Europe, to discuss where dementia would fit among their current programmes of work, whilst identifying how dementia could further be highlighted as a priority area. We were delighted by the positive engagement during this meeting and look forward to working further with them to prioritise dementia across the wider European region.