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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Caring for my mother

Carmel Geoghegan with her mother, Angela Doris Geoghegan, in 2011.

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 two of this series for International Women’s Day, Carmel Geoghegan writes about her experience of caring for her mother, touching on the rewards, stigma and life changing experiences it brought her.

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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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Challenging stigma in mental health: What we’ve learnt over 10 years

Time to Change aims to change the way we approach mental health.

In last year’s World Alzheimer’s Report, ADI looked at how dementia-related stigma is defined and how we can better understand it through its relation to power, stereotypes, prejudice and discrimination. Within the report, some of the expert essays and case studies examined this further by shedding light on the complexity of stigma.

Ruth Stone, Global Communications and Digital Manager, and Sue Baker, Director of Time to Change Global, contributed the case study, ‘Challenging stigma in mental health: What we’ve learnt over 10 years’. The piece looks at progress and continuing barriers for what is so well described as “the work of a generation”.


Ending mental health stigma is the work of a generation. I think that’s the most important thing we’ve learnt since starting Time to Change more than 10 years ago.

Stigma is deeply ingrained, through cultural norms, families, workplace culture, the media and even the words we speak. It is present at almost every level of society, which means our work takes time, perseverance, and a broad, flexible approach.

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Young Carers Awareness Day

by Annie Bliss, ADI Communications and Policy Manager

Globally we know that the number of people living with dementia is around 52 million and is set to triple to 152 million by 2050. We also know that every year, 82 billion hours are spent providing informal, unpaid care by family members in the home and that over 70% of this care is provided by women. (To put this in perspective, 82 billion hours is equivalent to 40 million full-time jobs).

Despite having these figures, something we know less about is young people providing this type of care.

One of the reasons we have so little information on this is that young people caring for a parent or relative with dementia do not typically self-identify as a ‘young carer’. This is common across other areas of health, and unfortunately prevents young people from accessing support services that can be crucial for them to cope with their caring responsibilities and look after their own well-being.

Youth participants in the Home Music Programme, set up by Alzheimer’s Indonesia (ALZI)
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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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Māori, Mana and Mate Wareware: Rauawaawa Kaumātua Charitable Trust and its experience in supporting Kaumātua with Dementia

The Rauawaawa Kaumatua Charitable Trust in Kirikiriro, NZ. Photo courtesy of the Rauawaawa Kaumatua Chartiable Trust Facebook page.

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

Rangimahora Reddy and Pare Meha of the Rauawaawa Kaumātua Charitable Trust, as well as Dr Etuini Ma’u of the Waikato District Health Board and Professor John Oetzel of the University of Waikato, contributed this piece that delves into the complexities surrounding diagnosing mate wareware (dementia) in Māori communities and how tailored cultural programmes can aid in supporting the individual and their whānau (family).

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Stigma and response to dementia in Guatemala’s Indigenous population

Prof Ricardo F. Allegri, MD, PhD and María Cecilia López Murga at XII Congreso Iberoamericano de Alzheimer, November 2019. Photo courtesy of Asociación Group Ermita Alzheimer de Guatemala

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of other chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

María Cecilia López Murga, the Executive of Asociación Group Ermita Alzheimer de Guatemala, contributed an essay that focuses on the sometimes difficulty in addressing dementia within Guatemala’s Indigenous communities and how Asociacion Group Ermita tries to address these challenges.

María Cecilia writes:
Dementia in Guatemala, in our indigenous peoples, is a taboo. The most numerous Indigenous people in the country is the Maya because it represents 39.3% of the total population and is made up of 22 linguistic communities, so for us it is a total challenge.

With the promotion and communication of our Association and with the use of social networks we have been able to reach the interior of our country and somehow make ourselves present in these communities who already come to our Grupo Ermita Association to seek help, support, comfort and information . In fact we have had the visit of families who have to travel 8 or 10 hours to reach us with their sick relatives.

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145 Indigenous languages and no word for dementia: use of innovation and technology to help overcome stigma

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of other chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

ADI Member Dementia Australia contributed this piece that looks at the importance of culturally sensitive diagnostic methods when addressing dementia within Indigenous Australian communities.

Maree McCabe, CEO of Dementia Australia and contributor to the piece, asks: “Dementia is complex. How do we communicate what is a complex message, to the many different and varied communities across this vast land? Technology combined with culturally appropriate cognitive assessment tools could be the answer.

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The circle of life; Indigenous knowledge about dementia in Canada

Dementia Research Advocacy Group.
Left to right, back row: Jules Osawamick, Roseann Debassige, Bonita Bebamash and Bill Antonie
Left to right, front row: Melissa Blind, Monica Pheasant, Jean McGregor-Andrews, Karen Pitawanakwat and Kristen Jacklin.

On World Alzheimer’s Day 2019, ADI released the World Alzheimer Report 2019: Attitudes to dementia. Within the report, there are number of chapters that highlight some of the challenges and innovative responses to dementia within Indigenous populations around the globe.

Kristen Jacklin, Professor of Medical Anthropology at the University of Minnesota Medical School Duluth and Karen Pitawanakwat, Registered Nurse and Community Researcher for Naandwechige-Gamig Wikwemikong Health Centre and member of the WikWemikong Unceded Reserve, contributed this piece that underlines the necessity in understanding the experiences of dementia within Indigenous communities in order to meet dementia care needs in a culturally appropriate way.  

Karen Pitawanakwat writes: “I want to introduce the concept of the circle of life as it relates to four of our seven grandfather teachings. Our elders are living in their seventh stage of life.  They have a lifetime of wisdom that is respected.  Interactions with an elder instinctively show kindness and love.  We are a humble people who value our time walking here upon the earth as a spiritual collective to learn and share for the benefit of seven generations who will walk the same earth ahead of us. In an elders last stage they are transitioning back into the spiritual world, part of the continuum of life.”

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TADA’s dementia advisory group: a rights based approach

TADA’s Dementia Advisory Group.

LiYu Tang is the Secretary General of Taiwan Alzheimer’s Disease Association (TADA). She holds a Master of Science in Psychiatric Nursing from the School of Nursing at National Taiwan University and has written several papers on issues surrounding dementia. She was recently featured as a guest speaker for ADI and Dementia Alliance International’s (DAI) joint webinar, ‘Dementia & rights: from principles to practice‘.

In this case study, ‘Dementia Advisory Group brings TADA Chinese Taipei to a new era of human rights’ from the World Alzheimer Report 2019, LiYu writes about the work that TADA has undertaken to establish a successful dementia advisory group in Chinese Taipei, as well as the problems and rewards that have come along the way.

During the joint webinar with ADI and DAI, LiYu touched on one of these difficulties, saying: “It is difficult to involve people with dementia to join dementia advisory groups; stigma is a very important factor. We only have one dementia advisory group in Taiwan but we hope in the future, more people will join this group and more groups in Taiwan.

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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.

Continue reading “Women as carers: gender considerations and stigma in dementia care”