Alzheimer’s Disease International makes key appeal at WHO 73rd World Health Assembly

Alzheimer’s Disease International submitted the following written statement devoted to the COVID-19 pandemic response in advance of the opening of the World Health Organisations’ 73rd Health Assembly held recently

Alzheimer’s Disease International (ADI) is the global umbrella organisation of Alzheimer associations, representing over 100 associations and federations and in official relations with the WHO since 1996.

In light of the global COVID-19 pandemic, we would like to express several concerns on behalf of the 52 million people living with dementia globally, and the millions of others impacted by the condition.

Age is the biggest risk factor for dementia, and we know the elderly are the age group being most seriously affected by COVID-19. With that in mind:

1. In view of the widespread global shortages of medical resources, especially ventilators, it is vital that healthcare professionals have clear guidelines to facilitate extremely difficult decision making – often in pressurised triage situations – about access to treatment.

2. When available, such guidelines should not be used in a way which is discriminatory on the basis of age or of having a condition like dementia. The rights of people living with dementia and their families must be respected and upheld.

3. Families all over the world are faced with incredibly difficult decisions about whether or not to hospitalise a loved one, risking not acting in their best interest but often having to decide without medical training or knowledge. Governments should help families facing these situations.

4. Elderly people in long-term care, the majority of whom have dementia, have been hit particularly hard by the COVID-19 pandemic – with a great number of COVID-19 related deaths occurring in long-term care facilities. In many countries, long-term care is seriously under-funded. It is imperative that governments recognise the need to integrate and coordinate health and long-term care and to fund both equally.

5. It is essential that the mental health and wellbeing of our world’s elderly populations is supported, in particular because they are a group already at greater risk of social isolation, and social distancing measures will apply to them for longer. We call on all governments to include dementia in their COVID-19 response plans.

6. We implore all governments to support palliative and end of life care for all individuals, especially those living with dementia who may be distressed and unable to express pain.

7. Social distancing measures during the COVID-19 crisis are necessary to control the spread of the virus but have resulted in increased isolation and great disruption to people’s daily activities that contribute to brain health. As a result, we are concerned that the number of people experiencing cognitive decline may increase. We will continue to follow this nascent area of research, and to support the distribution and awareness of the WHO risk reduction guidelines.

8. People with dementia often have other non-communicable diseases (NCDs) including mental health conditions. The prevalence of these conditions is likely to increase as a result of COVID-19. This crisis has shown that the people living with NCDs are not given commensurate funding or support services.

9. Diagnosis rates for dementia have decreased during the outbreak as people are afraid to attend clinics. This will greatly impact on people’s prognosis due to later diagnoses and cognitive decline occurring due to lack of support or access to medication. In addition, more families will be unable to access timely information on the condition and receive adequate psychosocial support. As a consequence, stigma may increase.

10. The possible disruption to clinical trials could be particularly devastating for those living with dementia, given that there is currently no disease modifying treatment and disease progression will exclude participation.

11. The mortality associated with the pandemic will also impact dementia prevalence.

The data on dementia-COVID-19 mortality is sparse, and we are concerned that the data around the number of people with dementia, who are dying in their homes, is not being recorded accurately.

We are concerned that the factors outlined above will undermine progress being made towards achieving the targets of the WHO’s Global action plan on dementia. We will continue to work with our member Alzheimer and dementia associations and the WHO to maintain progress, but it is essential that every Member State includes dementia in their responses to COVID-19. Otherwise, people living with dementia – whose concerns are so often side-lined at the best of times – will be left behind.