Dementia through the lens of the COVID-19 pandemic. What happened, and what about the future?

Jean Georges, Executive Director of Alzheimer Europe

Alzheimer Europe is a non-governmental organisation (NGO) aiming to providing a voice to people with dementia and their carers, make dementia a European priority, promote a rights-based approach to dementia, support dementia research and strengthen the European dementia movement. Alzheimer Europe is dedicated to mitigating the impact of COVID-19 on people living with dementia, their carers and families.


People with dementia have almost twice the risk for developing COVID-19 compared to their peers without dementia, with high rates of hospitalisation and a risk of mortality within six months of approximately 20% in certain populations. 


As the coronavirus spread across European countries, various restrictions were put in place ranging from the closure of important services such as day care or respite care to prohibition of visits to nursing homes and old people’s homes. This situation and some of these restrictions have also adversely affected people with dementia and their carers.


In the latest edition of Health Policy Talks, Jean Georges tells us how the COVID-19 pandemic has impacted people living with dementia, their carers and families.


Through this discussion, we hope to shed further light on the impact of the pandemic on people living with the disease, their carers and families, and also health and social care professionals, Alzheimer’s associations and dementia research and, not to forget, Alzheimer Europe itself.

 

Q1.How has the COVID-19 pandemic hit hardest people living with dementia, as well as their carers and families? What has been the impact on health and social care professionals?

 

COVID-19 posed considerable challenges for people with dementia and their carers, with new difficulties emerging at different stages of the pandemic. All too often though, people with dementia were the forgotten victims of the COVID-19 pandemic and were overlooked by public health responses at Member State level.

 

This despite the fact that dementia was linked to a higher risk of developing severe COVID-19 and a 75% higher risk of COVID-19 mortality.

 

Dementia was also the leading risk factor for hospital admissions and in some countries, such as England and Wales or Italy, people with dementia represented between 19 and 25% of all COVID-19 related deaths.

 

Despite these compelling statistics, few public health responses included people with dementia in guidance documents for vulnerable people at particular risk of contracting and dying of COVID-19. England and Ireland both made reference to neurological conditions, but these were the exceptions.

 

In the early stages, many people with dementia and their carers experienced the suspension of care and support services, both in their communities and at home. In hospitals, shortages of beds, medical equipment and medicines sometimes resulted in triage decisions which discriminated against older people and people with chronic conditions in general and people with dementia in particular.

 

During most of the pandemic, care homes suspended visits for people, with relatives, carers and others unable to see residents for prolonged periods of time. Particularly in community settings, a lack of contact, support services and disruption to daily routines significantly impacted people with dementia, their families and carers. For many people with dementia, this exacerbated the progression of cognitive decline, as well as worsening other symptoms often associated with dementia. For carers, anxiety, stress and increased hours of caregiving are just some of the many consequences which have had a negative impact upon their health and wellbeing.

 

For health and social care professionals, the increased workloads in health and care settings, in both trying and dangerous circumstances, has been incredibly difficult, with professionals faced with unprecedented challenges in triage, as well as exhausting conditions as the capacities of the health and social care have been stretched.

 

Q2.What have been the key learnings on dealing with the impact of the COVID-19 pandemic on people with dementia?

The COVID-19 pandemic has brought into focus the already existing inequities within health and social care systems, whilst at the same time exacerbating them. The public health responses to the COVID-19 pandemic have placed the greatest level of pressure on the most vulnerable in society, including people with dementia and their carers closing off many of the crucial community support services on which they rely.

 

I have to admit though that I am in deep awe of the amazing resilience of people with dementia and their carers in these challenging circumstances and how they were able to adapt to and confront the pandemic. We have received a number of positive reports on how people with dementia learned to use new technologies with the help of dedicated staff to stay in touch with their families and close ones.

 

The social care sector and national Alzheimer’s associations reinvented their care and support models at an amazing speed. Whilst in-person counselling and support was stopped, associations were able to develop online peer support, telephone helplines, virtual carer training programmes and remote cognitive and physical training for people with dementia. The importance of neighbourhood took on a new importance with neighbours or more formal programmes such as dementia friends providing much needed help with day to day chores such as shopping or deliveries of medicines.

 

Nursing and residential homes adapted and found new ways of organising safe family visits in specially equipped rooms or in outside spaces, such as gardens. Some nursing homes even allowed partners or other family members to move in with their family member for the duration of the lockdown. Others let their care staff stay and live with residents for longer periods so as to reduce the risk of infection from outside.

 

Although many national Alzheimer’s associations had to close their offices, they were able to continue providing information for people with dementia and carers on the COVID-19 pandemic and on new help and support systems.

 

It is essential that governments and decision-makers learn from this pandemic, ensuring that the distinct needs of vulnerable people are considered during all policy processes, ensuring that decisions taken do not create further difficulties for an already vulnerable group.

 

Q3.Which sub-groups of people living with dementia have been hardest hit by the COVID-19 pandemic? For instance, how can we better account for gender and socio-economic considerations in dementia management and care?

It is estimated that around two-thirds of people living with dementia are women, whilst the majority of carers of people with dementia are also women. Especially in the case of the latter, this significantly affects the ability of people to remain in work, often leading to a reduction in income in the short-term, whilst diminishing long-term social security and pension contributions. As such, it is well understood that women have, long before the pandemic, been disproportionately affected by dementia as a condition.

 

The pandemic is likely to have exacerbated the pressures faced by carers of people with dementia, particularly those caring for a person in their own homes. As mentioned before, the closure of support services, as well as vital supports such as respite care, have led to a significant increase in the caring role, with negative consequences for both their physical and mental health. However, the full effects of the pandemic and what this means for different sub-groups is still not fully understood and should be the subject of further research.

The COVID-19 pandemic has brought into focus the already existing inequities within health and social care systems, whilst at the same time exacerbating them.

-Jean Georges

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.

 

 

Q7. How do the activities laid out in the Alzheimer Europe 2021 Work Plan help to ensure that the needs of people with dementia, their carers and families are better addressed during these challenging times? How will this help reprioritise dementia as a public health and research priority? 

Now more than ever, it is essential that policy and decision-makers at both a national and European level understand the importance of dementia as priority, across the spheres of health, social affairs and research.


As lockdown and public health measures are gradually eased, with an aim of a returning to “normal”, it is imperative that the issues of the inequalities faced by people with dementia and their carers are addressed. We frequently hear of the need to return to “normal”, i.e., how things were before the pandemic. Yet for people with dementia and their carers, there must be a more ambitious aim to eliminate the health and social care inequalities which this pandemic has shone a spotlight on – a return to the pre-pandemic situation is wholly insufficient.


Alzheimer Europe’s work programme reflects this ambition. The policy approach outlined in the previous section outlines just some of our efforts in relation to prioritising dementia as a policy priority at a European level.


Our continued activities with our members, providing them with updates on the latest developments at an EU level, informing our responses to the EU’s various policy proposals, as well as involving them in our Alzheimer’s Association Academy with capacity building workshops, ensures that the Dementia Movement continues to be a strong network, able to share information, knowledge and ideas and allowing our national organisations discuss how to continue our campaign for change. 


A key component of this work will be our support of European Working Group of People With Dementia, a group of persons with dementia from across Europe, who are consulted on the work of Alzheimer Europe, as well as being involved in a number of EU-funded (covering a range of topics from basic research through to technology and digital) in which we are involved. Working with this group and having their input into the full breadth of our work is absolutely vital – it is essential that the work of Alzheimer Europe reflects their views, their aspirations and their priorities.


Q8. The use of technology by and for people with dementia and carers during the COVID-19 pandemic has been important. How do you see this further evolving? 

The use of technology and digital resources during the pandemic was undoubtedly a vital component of providing some measure of support during the pandemic, when in-person supports have not been possible. Examples of which we are aware from our members include online peer support groups, exercise classes and resources and information, online and digital resources, amongst many others.


It is likely that this trend towards greater digitisation of resources is likely to continue, with greater use of technology to help support people living in their communities and to live more independently with their condition. This includes the potential for mobile applications and wearable technologies, which may also be useful in helping identify patterns or changes in behaviour, which may indicate an underlying health need or change in condition.


However, whilst we recognise the potential for the digitalisation of some services and the use of technologies in providing support for people with dementia and their carers, we are acutely aware that not every person with dementia or carer has the requisite skills or equipment to make use of online services or technologies.


As such, it is important that these developments are seen as supplementary to the in-person care and support. People should be informed about the options available in relation to technology and digital services, however, it must be their choice as to whether these options are suitable for them and whether they wish to use them or not.


                         


Q9. Pandemics like COVID-19 are becoming more likely. How can we be better prepared in the future to protect people living with dementia, their carers and families from such health crises?

As mentioned before, there are a number of lessons which should be learned and applied to the current response to the pandemic, but which will also have importance for future public health responses. Measures such as confinement, shielding and lockdowns are still ongoing in many places, however, their effects are still not fully understood and the unintended consequences of these measures for people with dementia and their carers have been grave.


With the benefit of experience, hindsight and a wealth of information and data, it is our hope that future pandemics will be dealt with in a more nuanced manner, with no repeat of the measures seen in the first months of the pandemic in 2020. Furthermore, it will be imperative for decision-makers in future to give greater consideration to the impact of proposed public health measures on vulnerable groups, such as people with dementia and their carers.

Share Story With Others:

Similar Stories

Health Policy Talks
This series of interviews has been initiated by Anna Dé to talk with the movers and shakers on Global and European health policy matters.
+ WANT TO TAKE PART?