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SS3. Dementia and COVID-19

Detailed programme and abstracts

SS3.1. Dementia care in times of COVID-19: telemedicine care at Memory Clinic, Fundació ACE Barcelona

BOADA Mercè1-2, BENAQUE Alba1, GURRUCHAGA Miren Jone1, ABDELNOUR Carla1-2, HERNÁNDEZ Isabel3, CAÑABATE Pilar1-2, ALEGRET Montserrat1-2, MORERA Amèrica1-2, GUITART Marina1, RODRÍGUEZ Isabel1, TÁRRAGA Lluís1-2, RUIZ Agustín1-2

1Research Center and Memory Clinic. Fundació ACE. Institut Català de Neurociències Aplicades. Universitat Internacional de Catalunya, Barcelona, Spain, 2Networking Research Center on Neurodegenerative Diseases (CIBERNED), Instituto de Salud Carlos I, Barcelona, Spain

Background: Fundació ACE, Barcelona Alzheimer Treatment & Research Center, is a non-profit organization, providing care based on a holistic health care model to persons with cognitive disorders or dementia and their families since 1996 in Barcelona, Spain.  To ensure continuity of care amidst the COVID-19 pandemic has represented a major challenge to our institution.

Objective: To share our experience adapting face to face model of care to telemedicine during the COVID pandemic

Methods: Detail the sequence of events and actions undertaken within Fundació ACE Memory Clinic to swiftly adapt to telemedicine consultations. Characterize individuals under follow-up by the Memory Unit from 2017 to 2019 and compare the number of weekly visits in 2020 performed before and after lockdown was imposed.  Present the evolution of videoconference visits’ adoption and the neurologist and neuropsicologist evaluation protocol adaptation.

Results: The total number of individuals being actively followed by Fundació ACE Memory Unit grew from 6928 in 2017 to 8147 in 2019. Among those newly diagnosed in 2019 most patients had mild cognitive impairment or mild dementia (42% and 25% respectively). Weekly visits dropped by 60% following the suspension of face-to-face activity. However, by April 24th we were able to perform 78% of the visits we averaged in the weeks before confinement began and during that week 74% of programed appointments (475) already accepted telematic visit (350).

Discussion: We have shown that Fundació ACE model of care has been able to successfully adapt to a health and social critical situation as COVID-19 pandemic. We also expose pros and cons, detected on the implementation of this approach, for both, users and professionals to seize the opportunity to improve our model of care and experience. Overall, we were able to guarantee the continuity of care while preserving the safety of patients, families, and professionals.

SS3.2. Covid-19: Stress, anxiety and resilience in family carers caring for migrants with dementia

SMITS Carolien1, KOLSTE Roshnie1, WOLTERS Teuni2

1Pharos, Dutch Center of Expertise on Health Disparities, Utrecht, Netherlands, 2Pharos, Dutch Centre of Expertise on Health Disparities, Utrecht, Netherlands

Aim: Covid-19 measures have severely restricted personal contact between people with dementia and their relatives. Migrants with dementia and their relatives often need culture sensitive professional care. This prospective study aims for insights in the Covid-19 experiences of family caregivers of people with dementia from minority ethnic groups.

Method: Weekly semi-structured telephone interviews during three months with five family carers with a partner or parents receiving home or residential care throughout the Netherlands. Families have a Turkish, Moroccan and Moluccan cultural background. Topics include: experiences with Covid-19 measures, problems and solutions, support needs.

Preliminary results after 3 interview cycles:  All family carers report anxiety and stress related to Covid-19 and the government measures. They miss personal contact with their loved one. Carers are concerned about the health of their family member and some observe increased loneliness, depression and cognitive decline. Care tasks require more planning and direction. Care tasks increasingly need to be done by a single caregiver, increasing carer burden. Carers appreciate care professionals, but are critical of care quality relating to; inconsistent use of protective measures, employment of flexible workers and time left for personal contact. Care may become less culturally sensitive as the older migrant has nobody to talk to in the native language. Furthermore, carers mostly obey government measurements. However, personal interpretations of the information may result in very strict hygiene measures. Muslims may be mentally and physically challenged by Ramadan routines. Most, but not all carers feel supported by relatives, neighbours and friends. Some need a relief of burden by professional care.

Conclusion:  Covid-19 and government measures have resulted in anxiety and increased burden for migrant family carers. Professional care quality is under pressure and may become less culture sensitive. Further results will show changes over time as the Covid-19 pandemic and related measures develop.

SS3.3. In the midst of a global pandemic, what have we learned about remote care approaches using technology?

COOPER Nicola, FYFE Gillian

Alzheimer Scotland, Edinburgh, United Kingdom

Following lockdown in March, Alzheimer Scotland’s challenge was to find new ways to stay connected to service users, and crucially at this time, provide continuity of support.

In a few short weeks we had transformed our care approaches through the use of technology, experiencing a paradigm shift in how we deliver services.

Over 200 staff undertook digital skills training and now use the NHS approved Attend Anywhere video platform to deliver 1:1 support and a range of therapeutic group activities, including cafes and ceilidhs, for service users at home and in care settings.

There had been two critical factors making this possible: firstly, barriers experienced previously had been dissolved by the sudden, urgent need to support service users remotely; and secondly learning from our Scottish Government funded National Digital Projects had given us the knowledge base and evidence needed to take this forward rapidly, at scale.

Our aim was to understand how technology could be used to support PLWD to stay independent at home and to avoid preventable health and care admissions. We worked with 30 families, where one person had a diagnosis of dementia, to prescribe a personalised technology bundle supporting identified outcomes. Interestingly, even prior to the COVID19 outbreak, the greatest self-assessed need was to be able to stay connected and safe and we identified technology, including voice-based assistants, that fulfilled this function, enabling families to stay in touch and check in with loved ones remotely.

Our approach is closely aligned to National Strategic directives advancing Resilience within vulnerable populations and mitigating digital exclusion through the provision of equipment and mentoring in the “No-one left behind’ initiative.

In responding to this national emergency, we have demonstrated that when utilised appropriately by an empowered workforce, technology can be an effective conduit of person-centred care, now and in the future.

SS3.4. Psychosocial supports during Covid-19 for people with dementia and family carers

O'PHILBIN Laura, ROCK Bernadette

The Alzheimer Society of Ireland, Dublin, Ireland

The outbreak of Covid-19 has forced the closure of almost all community-based dementia-specific services and supports in Ireland and abroad, leaving thousands of people with dementia and family carers to face this emergency alone. Innovative services are urgently required to meet the needs of people with dementia and family carers for the foreseeable future.

The aim of this research was to explore Covid-19 challenges, required supports, and desired solutions from the perspective of people with dementia and family carers. This represented a first step in developing a new suite of psychosocial supports and services for this cohort. Online and telephone surveys were carried out with 16 people with dementia, 95 family carers and 36 other stakeholders. Reported challenges included a) pervasive loneliness and social isolation, b) a lack of routine and boredom leading to a deterioration of symptoms of dementia and responsive behaviours and c) fear, anxiety, and feeling overwhelmed.

Most participants reported needing both practical and emotional support. Suggestions for interim support measures were mostly simple and inexpensive. These included regular ‘check in’ phone calls, peer support, more offline information, and engaging home-based activities. Some family carers also highlighted the need for respite. While offline (i.e. non-digital) support remains essential, there appears to be some desire for online interventions too (e.g. online activities and support groups).

Using this data, The Alzheimer Society of Ireland has developed a new suite of emergency supports and services for people with dementia and family carers. Drawing on qualitative and quantitative research, this presentation will provide an in-depth look at how Covid-19 is impacting people with dementia and family carers and the supports and resources that they require. We will also discuss our newly developed services and preliminary data on their impact and efficacy. 



Last Updated: Tuesday 30 June 2020


  • Acknowledgements

    The 30th AE Conference received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe gratefully acknowledges the support of all conference sponsors.
  • European Union
  • Roche