(Ben Sajet Centrum, Pharos, Trimbos Institute)
This subproject complements subproject 1 by involving older people who are less likely to participate in a panel study and by using a qualitative methodology detailing lived experience. Through repeated in-depth interviews, the study focusses on the impact of the COVID-19 measures on the everyday lives of three groups of vulnerable older adults: those living with cognitive problems (dementia), older adults living with complex health needs (such as comorbidities), older adults living in socially and economically challenging situations (e.g. with social networks under pressure, language barriers, or living at a subsistence minimum). Study participants have diverse backgrounds in terms of migration history, gender, area of residence (urban and rural) and place of residence (home in the community and institution). Following Ben Sajet co-creation practices, a working group of professional and informal caregivers will be established that closely works with the researchers to co-design relevant project recommendations.
This subproject focuses on the experiences of vulnerable older adults and informal caregivers during the COVID-19 measures. How does this situation affect them? Which problems do they experience? Which solutions are being developed? And what kinds of support do they receive?
During the first phase of the project, we have followed 12 older adults and 4 informal caregivers by interviewing them once every two weeks. Additionally, Pharos has focused specifically on the experiences of 5 informal caregivers with a migrant background.
Since the implementation of the COVID-19 measures, social contact has become limited for many older adults. Both meetings with family and friends and everyday encounters in the neighborhood have stopped. Also organized activities, at home with volunteers, at daycare centers and in nursing homes have been suspended. As a result, daily routines have been disrupted, which can strengthen feelings of loneliness.
Many older adults and informal caregivers indicate that they worry or are anxious. Many struggle with the consideration of the quality of life and risk of contamination. Although many maintain contact through telephone and video calls, there is still a strong need for personal and physical contact.
For both older adults and caregivers, there is a need for contact that does not only consist of distraction, but that allows being involved and maintaining meaningful relationships as part of a social network. Reciprocity is thus essential.
Many family members of nursing home residents feel powerless since they cannot visit their relatives and cannot care for the person and their surroundings as they were accustomed to.
In the specific case of dementia, family members expressed the fear that the person with dementia will decline to a point where they may no longer recognize them once contact is possible again. Some also fear that this deterioration might go even faster as activities in the nursing home and daycare centers have been cancelled.
The interviews held by Pharos show that people with dementia and informal caregivers with a migrant background are severely affected by the COVID-19 measures. The older adults, both at home and in nursing homes, tend to experience more loneliness due to the lack of contact and not being able to speak their native language. Due to the restrictions and associated added organization, more care responsibilities may have to be taken up by a single family member, for example, a bilingual child who is not at high risk themselves. This caregiver may experience added stress or become overwhelmed.
Madam is 95 years old. She is visually impaired and lives in a nursing home. She has a large social network and used to receive regular visits from family, friends, and former neighbors. She calls herself a “people’s person.” “At this moment, it is very, very hard,” she says. “It is so valuable when someone takes time for you and sits with you. I want to be part of things.” She finds it difficult that her children are not allowed to visit, “even if it was just one of them,” also because there is much that needs to be done, such as the laundry and the mail. She is also worried about the risk of contamination. If she would fall ill now or would die, her children would not be allowed to be with her, which to her is “a very strong fear.” Every day, she looks forward to doing crossword puzzles with a friend through the telephone. She mentions: “I look forward to it. It is the only outing I have in a day.”
Care networks for English-speaking older people during Covid-19 in the Netherlands and the UK
Leila is a Masters student in Cultural and Social Anthropology at the University of Amsterdam. Her thesis research explores how care for older people is being organised and experienced during the Covid-19 pandemic among English speaking older people in the Netherlands as well as older people in the United Kingdom. She will interview these people and other actors in their care networks to understand how they are coping with the unprecedented social distancing measures, the difficulties they face and the creative solutions that they might have implemented to enable continued care and social connection. Her project will examine the intersection between care, home and technology, in everyday life.
Read more on this topic:
Reports and Publications
Alzheimer’s Disease International (ADI) position paper on COVID-19 and dementia
COVID-19 and dementia: Difficult decisions about hospital admission and triage
Meeting the Care Needs of Older Adults Isolated at Home During the COVID-19 Pandemic
‘Meneer De Koning laat zich vrijwillig opsluiten in het verpleeghuis, om bij zijn vrouw te zijn’
Trouw 7 April 2020
‘Waarom zou ik níet bij mijn oude moeder op bezoek gaan?’
Trouw 16 April 2020
‘Politieke machteloosheid over sterfte in verpleeghuizen’
Trouw 16 April 2020
‘Artsen en ethici: versoepel bezoekregels voor familie van ziekste coronapatiënten op ic’
De Volkskrant 16 April 2020
‘Ouderen knappen op van levend ganzenbord: In beweging én weer wat te vertellen’
Algemeen Dagblad 7 April 2020
‘Ruim 5.300 besmettingen in verpleeghuizen’
NRC Handelsblad 15 April 2020 (Paywall)
‘Alzheimer Nederland over sterfte onder dementerenden: Verpleeghuizen zitten in een vreselijke rotsituatie’
Trouw 9 April 2020
‘Ethische richtlijn in de maak: wie krijgt er straks voorrang op een IC-bed?’
NOS 7 April 2020
‘Gespreksochtenden voor ouderen gaan gewoon door per telefoon’
Friesch Dagblad 10 April 2020
‘Doden in verpleeghuizen: zoek niet naar schuldigen, maar richt je op kwaliteit van leven’
NRC Handelsblad – Anne-Mei The – 14 April 2020 (Paywall)
‘Bezoekverbod is op den duur onhoudbaar’
Zorgvisie – Anne-Mei The – 17 April 2020
‘Blog: Coronamaatregel voor verpleeghuizen vraagt zorgvuldiger toelichting’
Zorgvisie 25 Maart 2020
‘Dit doen verpleeghuizen om de lock-down op te vangen voor bewoners’
Zorgvisie 25 Maart 2020 (Paywall)
Inge Borghuis: oproep bezoek weer toe te laten:
‘We laten ouderen niet alleen overlijden met mensen in witte pakken’
Zorgvisie – Inge Borghuis Amstelring – 19 Maart 2020 (Paywall)
‘Verzorgenden: ‘Bezoekverbod moet blijven’’
TVV 3 April 2020
‘Brief voor ouderen in verzorgingshuis: ’Jullie hebben de oorlog meegemaakt, klaag niet’’
De Telegraaf 25 Maart 2020 (Paywall)
‘Ouderen terughoudend met vragen hulp onbekende’
RTL Nieuws 10 April 2020
‘Gesloten verpleeghuisdeuren. Strijd tegen eenzaamheid’
Trimbos Instituut 26 Maart 2020
‘Hoe houden ouderen het vol in isolatie? ‘De parkieten zeggen niks terug’’
Volkskrant 10 April 2020
‘Ouderen harder geraakt door coronavirus: ‘Ze moeten zelf de regie nemen’’
Parool 14 Maart 2020
Ben Sajet Centrum
Leyden Academy on Vitality and Aging
Vilans: Landelijke kennisorganisatie voor langdurende zorg
Movisie: Landelijk kennisinstituut van sociale vraagstukken
Waardigheid en trots
Radicale vernieuwing verpleeghuiszorg
iNTERDEM pan-europees netwerk dementie-onderzoekers:
Netwerk NOOM Netwerk van organisaties van Oudere Migranten
Ouderen infolijn: 030-3400600