Alzheimer Europe is a non-profit, non-governmental organisation (NGO) aiming to provide a voice to people with dementia and their carers, making dementia a European priority, on a rights-based approach. Alzheimer Europe has 39 members from 35 countries around Europe and beyond.
As the current coronavirus (COVID-19) pandemic is affecting millions of people around the world, Alzheimer Europe felt the urgency to address the challenges faced by people with dementia, their informal carers, and the health and social care professionals looking after them. On the 14th of April 2020, Alzheimer Europe published a statement entitled “Recommendations on promoting the wellbeing of people with dementia and carers during the COVID-19 pandemic”. (click on link to read the full document).
Here is a sum-up of the key points from Alzheimer Europe’s statement:
The current situation poses unprecedented challenges to people affected by dementia, their informal carers and the health and social care professional providing treatment, care and support.
Disruption of routine and the fear of being abandoned might increase anxiety and depression among people living with dementia. Some people might experience a deterioration of their condition. Others might put themselves (or others) at risk if they don’t understand or fail to comply with the measures put in place by many governments (e.g. social distancing).
Some informal carers might have to decide to cancel the support they offer, to reduce the risk of infection. Where informal carers live with the person with dementia, the increased time spent together, plus the lack of practical and emotional support, may lead to tension, burnout and even abuse. Some carers might not be aware of the forms of support still available and how to reach out for help.
Health and social care professionals have to cope with increased workloads, resulting from reduced levels of staff. They face unprecedented levels of stress and emotional load. They are putting at risk their own safety (and their loved ones’) to be able to provide care, as in many countries, they have to work with protective clothing which is scarce or inadequate. Under normal circumstances, relatives and close friends contribute towards maintaining the psychological and emotional wellbeing of people with dementia. Restrictions to visits due to lockdown measures are making this difficult, if not impossible. Health and social care professionals might struggle to maintain the morale of their residents, patients and clients with dementia, as feelings of loneliness, boredom and depression increase.
Recommendations
Alongside recommendations for the Alzheimer’s Associations members of Alzheimer Europe, Alzheimer Europe complies a list of recommendations aimed at health and social care professionals and governments.
Recommendations aimed at health and care professionals
Health and social care professions should be able to:
• facilitate contact with relatives and close friends of the person with dementia via phone and online communication
• contact informal carers and legal representatives so as to enable them to contribute towards treatment and care decisions when appropriate
• respect the wishes and preferences expressed in advance
• under exceptional circumstances, such as emergency or end-of-life situations, allow limited visits from family members, if safe for other residents and staff
• prevent the use of physical, mechanical and chemical restraint to manage difficult care situations. In extreme cases, such use should always be in accordance with legal requirements.
Recommendations aimed at governments
Regarding measures to be taken to protect the public from harm
• measures should always be proportionate to risk and potential benefits.
• measures should include a plan to address the needs of vulnerable groups
• priority testing should be ensured for all health and social care staff, at all levels and irrespective of employment status
• unnecessary barriers, which prevent health and social care professionals from providing essential services to vulnerable groups, should be removed (e.g. by provisionally extending the residence rights of live-in migrant carers)
Regarding accessible communication
Governments should reach out to people with dementia in collaboration with national Alzheimer’s associations, with easy-to-understand information, not culturally-biased and culturally sensitive. Such information should:
• include instructions regarding distancing that emphasise the need for physical distancing but encourage social interaction via phone, social media and online meeting apps
• include messages specifically targeted at people from minority ethnic groups, and should be developed with the help of people from the relevant communities
• correspond to the needs of people with lower levels of education, as well as people with intellectual disabilities affecting comprehension
Regarding financial resources allocation and logistics support
• people with dementia should have guaranteed access to formal support during the pandemic (e.g. to food, necessary medication, care and support, and protection from fraud, scams and abuse)
• NGOs and charities should be able to continue providing valuable support and services
• health and social care professionals should get access to suitable and adequate personal protective equipment (PPE), both in private and public sector
• essential medicines and disinfectants, and reliable information on their appropriate use, should be made available
• younger people in paid employment should be able to stay at home to provide full-time care, if needed, for people with dementia
Blog written by Giorgia Previdoli
Notes on the author
Hi everyone, my name is Giorgia and I am administrator for the Doctoral Training Centre on improving transitions in Dementia Care. At the moment, I am working from home while caring for an exuberant 3 year old, called Viola.
I moved to the UK five years ago. Being from Italy, I feel like I am living this pandemic twice, both “in Italy” and here in the UK. My concerns started growing on the 21st of February, when the first patient was found in Codogno, Lombardy, Italy. I was and still am fearing for my family there. Every day I listen to their worries and their frustrations for dealing with a national lockdown which has been ongoing for more than 6 weeks.
My thoughts today go to all the people affected by dementia who have a loved one living abroad. It is upsetting not being able to imagine when travelling will be possible again.
That day will come, eventually, and it will feel the best day of our lives.
