Italy in crisis: ADI member Alzheimer Italia on the impact of COVID-19 on people with dementia and how they have adapted to support them

Mario Possenti, CEO of ADI’s member Federazione Alzheimer Italia shares his gratitude to the Italian health workforce for their support of people living with dementia in the wake of the COVID-19 crisis.

As we all know, Italy was the first European country to be significantly affected by the spread of COVID-19 and while we can read all the numbers, what we imagine with difficulty are the tragedies that are taking place near us.

Right now all of Italy is in quarantine; no one can leave except for non-extendable needs. The sound of urban traffic in our cities has given way to an unreal silence broken only by the sounds of ambulances that transport patients to the nearest hospitals.

Undoubtedly, the curve COVID-19 infections shows how the north of our peninsula – the most industrial part – is the area most affected by the epidemic. Perhaps because there has been more contact with China or perhaps just because of a strange game of fate.

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ADI’s member CEAFA reveals how they have adapted to support people living with dementia during COVID-19

Jesús Rodrigo, CEO of ADI’s member Confederación Española de Familiares de Enfermos de Alzheimer (CEAFA) shares his experiences of supporting people with dementia and their carers during the COVID19 outbreak.

At the time of writing, the number of deaths by COVID-19 in Spain exceed those in China. In just a few weeks, the daily life of the country has been completely turned around; although at the outset the measures taken were not forceful, since 14 March we have been in a state of emergency. Since then, family associations of people with Alzheimer’s have had to cease their activity, meaning that 200,000 families have stopped receiving the specialized services and cares that these associations offer. It has been the authorities that have forced, for safety reasons, the closure of Alzheimer’s therapeutic centers. As a side effect, most professionals have temporarily lost their jobs.

However, at CEAFA we have been able to adapt to the situation, and all the professionals at headquarters continue our activities thanks to telework, which is allowing us to continuously support our Associations (a network of more than 310 across the country). Such support activities include:

  • We have enabled a space on the CEAFA institutional website specifically dedicated to COVID-19, with a direct link to the Ministry of Health’s website, containing up-to-date information on the evolution of the pandemic.
  • We have put in place an official information access alert system published by the central government, which is sent in real time by email to the entire structure of the Confederation. In addition, all this information is available on the CEAFA website. The purpose of this information is to provide tools that promote the management of associations from the economic, labor, tax, etc. perspectives.
  • We have established a knowledge bank in which associations deposit tools, materials, documents, etc., aimed at facilitating the homefunding of both people with dementia and their caring relatives. All this material, in addition to being available on the CEAFA website, is also shared through social networks, available to all people who may be interested.
  • Right now, we are in the process of setting up a good practice bank, in which associations have been invited to share their experiences and strategies to deal with the chaos and uncertainty of COVID-19, as well as to continue to support families affected by dementia who are at home.

The alarm status will continue until at least 11 April, although it may be longer. Possibly, the least of the ills is home confinement – despite how hard it is, especially for the most vulnerable groups. Most likely, the worst is to come and, paradoxically, it will occur once the vaccine for the virus has been found. The return to “normality” is going to be the great challenge that we will have to face.

In order to do this, we have to begin preparing and raise questions like: will all associations have sufficient capacity to reopen their centres? Are all professionals going to be able to get their jobs back? Will users go back to associations? Are we really going to be able to get back to normal?

These issues and others that we will need to ask ourselves in the short term are likely to change the way we work and act; surely the COVID-19 crisis will mark a before and after in the way we work and will require us to make changes. We must evolve to adapt to the new situation that we are going to have to experience. In all these processes, we will play an active part and try to give specific support to the Confederations, in order to continue our contributions to improving the quality of life of those affected by dementia.

Read more about CEAFA’s work on their website: https://www.ceafa.es/es

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El miembro de ADI CEAFA revela cómo se han adaptado para apoyar a las personas que viven con demencia durante COVID-19

En el momento de escribir este texto, el número de muertes por COVID-19 en España superan a las ocurridas en China. En apenas unas semanas la vida cotidiana del país se ha visto totalmente modificada; si bien al principio las medidas adoptadas no fueron contundentes, desde el 14 de marzo vivimos en estado de alarma. Desde entonces, las asociaciones de familiares de personas con Alzheimer han tenido que cesar su actividad, lo que significa que 200.000 familias han dejado de recibir los servicios y atenciones especializados que estas asociaciones ofrecen. Han sido las autoridades las que han obligado, por motivos de seguridad, a cerrar los centros terapéuticos de Alzheimer. Como efecto colateral, la mayoría de los profesionales han perdido temporalmente sus empleos.

No obstante, en CEAFA hemos podido adaptarnos a la situación y todos los profesionales de la sede central continuamos nuestra actividad gracias al teletrabajo, lo cual nos está permitiendo apoyar continuamente a nuestras Asociaciones (una red de más de 310 en todo el país). Las actividades de apoyo incluyen:

  • Hemos habilitado un espacio en la página web institucional de CEAFA específicamente dedicado al COVID-19, con un enlace directo a la web del Ministerio de Sanidad, conteniendo información actualizada sobre la evolución de la pandemia.
  • Hemos puesto en marcha un sistema de alerta de acceso a información oficial publicada por el Gobierno central, que se remite en tiempo real por correo electrónico a toda la estructura de la Confederación. Además, toda esa información está disponible en la web de CEAFA. El objeto de esta información es proporcionar herramientas que favorezcan la gestión de las asociaciones desde las perspectivas económica, laboral, impositiva, etc.
  • Hemos habilitado un banco de conocimientos en el que las asociaciones depositan herramientas, materiales, documentos, etc., dirigidos a facilitar el confinamiento domiciliario tanto de las personas con demencia como de sus familiares cuidadores. Todo este material, además de estar disponible en la web de CEAFA, se comparte también a través de redes sociales, estando a disposición de todas las personas a quienes les pueda interesar.
  • Ahora mismo estamos en proceso de poner en marcha un banco de buenas prácticas, en el que se ha invitado a las asociaciones a que compartan sus experiencias y estrategias para afrontar el caos y la incertidumbre del COVID-19 y para continuar apoyando a las familias afectadas por la demencia que están en sus domicilios.

El estado de alarma se va a prolongar por lo menos hasta el 11 de abril, aunque es posible que todavía se alargue más. Muy probablemente, el menor de los males sea el confinamiento domiciliario (a pesar de lo duro que resulta, sobre todo, para los colectivos más vulnerables). Probablemente, lo peor está por venir y, paradójicamente, se producirá una vez se haya encontrado la vacuna contra el virus; la vuelta a la “normalidad” va a ser el gran reto que deberemos afrontar. Para hacer esto, tenemos que prepararnos desde ahora y plantera cuestiones como ¿todas las asociaciones van a tener la capacidad suficiente para volver a abrir sus centros? ¿todos los profesionales van a poder recuperar sus puestos de trabajo? ¿los usuarios van a regresar de nuevo a las asociaciones? ¿Realmente vamos a poder volver a la normalidad?

Estas cuestiones y otras más que deberemos formularnos en el corto plazo probablemente cambiarán nuestra manera de trabajar y de actuar; seguramente la crisis del COVID-19 marcará un antes y un después en nuestra manera de funcionar y nos va a exigir introducir cambios. Debemos evolucionar para adaptarnos a la nueva situación que nos va a tocar experimentar. En todos esos procesos tomaremos parte activa e intentaremos dar soporte específico a las asociaciones confederadas, todo ello, en aras de seguir contribuyendo a mejorar la calidad de vida de quienes conviven con demencia.

Obtenga más información sobre el trabajo de CEAFA en su sitio web: https://www.ceafa.es/es

Community initiatives from Malaysia to help the elderly and vulnerable during the COVID-19 outbreak

By Datin Jacqueline WM Wong of Demensia Brunei

On 1​6​ March 2020, the ​newly appointed ​Prime Minister of Malaysia Tan Sri Muhyiddin Yassin announced the Restricted Movement ​Order​. The Order is to be ​​enforced from ​​18 to 31 March 2020, with a possibility of extension or amplification based on the advice of the Ministry of Health.

Prime Minister of Malaysia Tan Sri Muhyiddin Yassin. Photo: Bernama/dpa

This Order prohibits mass movements and gatherings across the country including religious, sports, social and cultural activities. To enforce this prohibition, ‘non-essential services’ including all schools, government offices and business premises must be closed. For Muslims, this means the adjournment of all religious activities in mosques, including Friday prayers. Only ‘essential services’ such as grocery stores, pharmacies, banks and utilities will remain open.

The announcement raises concerns for those living in poverty and other low-income groups, the elderly, disabled and vulnerable. Furthermore​, it has potential implications ​for casual and wage workers, migrant workers, the self-employed and those with insufficient savings. Remote working is not a possibility for everyone.

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Women as carers: gender considerations and stigma in dementia care

This year, International Women’s Day focuses on equality; both at the individual and collective level. Our individual actions, behaviours and mindsets have the ability to impact society at a large scale. If we each focus on making society equal for all, we can create a gender equal world.

In part one of this part two series for International Women’s Day, we look at the role of women as carers in dementia care. Originally published in the World Alzheimer Report 2019, ‘Women as carers: gender considerations and stigma in dementia care’ addresses the often overlooked role that gender plays when it comes to the role of a carer for those affected by dementia.

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Stigma, dementia and age

Silvia Perel-Levin is the Chair of the NGO Committee on Ageing in Geneva advocating for the human rights of older persons. She is also an independent consultant on ageing, health and communication.

She will appear as a panellist during ADI’s joint webinar with Dementia Alliance International (DAI) on 27 February.

Silvia moderating a side event on ageism at the Human Rights Council in July 2019.

“While dementia is not an inevitable result of ageing, people with dementia are likely to experience a double stigma, with the distinction between dementia stigma and ageism becomes blurred.

Growing old does not mean that we cannot do the things we like doing. However, the assumption that the decline is inevitable translates into prejudice and discrimination affecting all aspects of our daily lives. We are stripped of our rights in arbitrary ways on a routine basis based on wrong assumptions. We become invisible sufferers of social injustice.

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Meera Pattabiraman, Chair of Alzheimer’s Disease and Related Disorders Society of India (ARDSI), on recent policy development around dementia

Meera Pattabiraman, Chair of ADI Member Alzheimer’s & Related Disorders Society of India (ARDSI), writes about ARDSI’s successful engagements with the Ministry of Health and Family Welfare in India, a country where over 5 million people live with dementia.

Alzheimer’s & Related Disorders Society of India (ARDSI) has been diligently following up with the Ministry of Health and Family Welfare since we submitted the Dementia India Strategy Report to then Health Minister, Sri. J P Nadda, last September. As we have a new Health Minister, it became imperative that we bring to his attention the mandate of the WHO’s Global Action Plan calling for all countries to develop their own national dementia plans.

Dr Radha Murthy, Vice Chair of ARDSI (right) and Meera Pattabiraman, Chair of ARDSI (centre), handing over the request for a national dementia plan to India’s Health Minister, Dr Harsh Vardhan.
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