The early impacts of COVID-19 on unpaid carers of people living with dementia: part II of a mixed-methods systematic review

Figures & data

Figure 1. PRISMA flowchart.

From: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. doi: 10.1136/bmj.n71

Table 1. Overview of included studies.

Authors	Country	Population (people with dementia/carers/ sample size)	Focus	Design	Measures	Qual: themes generated Quant: outcomes	Setting	Time period of data collection
Alexopoulo et al., 2021	Greece	Carers of people with mild (N = 13) and major (N = 54) neurocognitive disorder (about carers)	Care burden, mental health, cognition	Quantitative	Telephone survey was based on items of the neuropsychiatric inventory questionnaire, the AD8 Dementia Screening Instrument, and the Bristol Activities of Daily Living Scale. Generalized Anxiety Disorder 7-Item (GAD-7) and the 22-item Impact of Event Scale-revised (IES-R).	Caregiver distress severity during the confinement period was influenced by memory deficits, neuropsychiatric symptoms of people with dementia, caregiver hyperarousal and avoidance symptoms and worries directly linked to the COVID-19 crisis.	Community	N/A
Altieri; Santangelo, 2021	Italy	84 carers of people with dementia (about carers)	Carer burden, mental health	Quantitative	Online survey, a sociodemographic questionnaire, the Italian version of Hospital Anxiety and Depression Scale (HADS), the Italian version of the Resilience Scale for Adults (RSA), the Italian version of Caregiver Burden Inventory (CBI).	Produced psychological consequences in carers of people with dementia, with an increase of levels of depression. High resilience had a negative effect on anxiety levels.	Community	April 21st and May 3rd
Azevedo et al., 2021	Argentina, Brazil, Chile	321 family carers of people with dementia (about people with dementia and carers)	Care Burden, Mental health, Behaviour	Quantitative cross-sectional study	Questionnaires were applied via telephone – age, sex, education level, socioeconomic status (through appropriate instruments for each Country), kinship, medical diagnosis, and severity of dementia.	Individuals with dementia felt sadder and had increased anxiety symptoms. Compulsive-obsessive behaviour, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently. Carers reported feeling more tired and overwhelmed.	Community	May–July 2020
Borelli et al., 2021	Brazil	58 people and carers (about people with dementia and carers)	Care burden, mental health, cognition	Quantitative cross-sectional study	The Neuropsychiatric Inventory Questionnaire (NPI-Q), Zarit Burden Interview (ZBI), Beck Depression (BDI) and Anxiety (BAI)	Cognitive decline was shown, as well as behavioural symptoms especially apathy/depression and functional decline. Increased carers’ psychological distress.	Community	May 2020–July 2020
Borg et al., 2021	France	398 carers accompanying a people with dementia living at home (HC) and 159 accompanying a people with dementia living in a nursing home (NHC) (about people with dementia and carers)	Care burden, Mental health	Quantitative cross-sectional study	Online survey – Anxiety was assessed with the GAD-7 scale, Depressive symptoms were assessed with the CES-D scale, caregiver’s burden was assessed using the validated short version of the Zarit Burden Interview, and level of self-rated stress was assessed with a visual analog scale ranging from 0 (no stress at all) to 10 (highest stress you can imagine).	Half of the carers exhibited poor mental health, including depression, anxiety, or self-reported stress. 126 PWD (34%) went to day care facilities before lockdown, this type of professional support was totally suspended during the lockdown.	Community and nursing home	17th March–11th May 2020
Borges-Machado et al., 2020	Portugal	36 carers (about people with dementia and carers)	Care burden, mental health	Quantitative	Survey – Barthel Index (BI), The NPI 30 was used to analyse the BPSD, CarerQol was used to address Carer-Qol-7D, and CarerQol-VAS.	Increased caregiving burden and a decline in their well-being. People with dementia decreased their volume of physical activity, and conversely increased their sitting time, decreased well-being.	Community	November 2019–June 2020
Boutoleau-Bretonnière et al., 2020 (2 papers)	France	38 carers (about people with Alzheimer’s disease and carers) 38 behavioural variant frontotemporal dementia (bvftd) and 38 Alzheimer disease (AD) carers (about carers)	Cognition, Mental Health, care burden Behaviour, Care burden	Quantitative	The Neuropsychiatric Inventory-Questionnaire Standardised surveys, The Neuropsychiatric Inventory (NPI) Questionnaire	Only 10 had neuropsychiatric changes. Confinement seems to impact neuropsychiatric symptomatology in people with AD with low baseline cognitive function. The duration of confinement significantly correlated with both the severity of their neuropsychiatric symptoms, as well as with the distress experienced by their carers Bvftd carers – increased burden regardless of behavioural changes. AD carers -increased burden related to changes in people with AD neuropsychiatric symptoms.	Community	26th March–9th May 2020
Carcavilla et al., 2021	Spain	106 family carers of people with dementia (about carers)	Care burden, mental health	Quantitative descriptive cross-sectional study	Online survey – Caregiver’s profile, main problems for the caregiver and consequences for both people with dementia and their carers during COVID,	Family carers of people with dementia experienced psychological problems, like anxiety, mood, sleep, or eating disorders during confinement.	Community	May–June 2020
Carpinelli Mazzi et al., 2020	Italy	239 carers of people with dementia (about people with dementia and carers)	Access to care, Mental health, Care burden	Quantitative	Telephone survey: Italian versions of Zung’s depression and anxiety assessment Scales (ZDAAS), the Perceived Stress Scale (PSS), The ZBI (Zarit Burden Interview)	people with dementia were deprived of care services and time of isolation had a significant negative effect on anxiety and depression in carers.	Community	N/A
Cohen et al., 2020a	Argentina	119 family carers of persons with AD or related dementia Living at home (about people with dementia and carers)	Behaviour, mental health, health	Quantitative	Questionnaire survey: designed a visual analog scale to study the burden of care that family members or paid caregivers experienced before and during the epidemic, demographics of family members, paid caregivers, and dementia subjects	Increased anxiety (43% of the sample), insomnia (28% of the subjects), depression (29%), worsening gait disturbance (41%), and increase use of psychotropics to control behavioural symptoms. Social isolation, lack of outpatient rehabilitation services, and increased stress of family carers	Community	N/A
Cohen et al., 2020b	Argentina	80 family carers of persons with Alzheimer’s disease (about people with dementia and carers)	Mental health, care burden, access to care	Quantitative	Questionnaire survey: Items included demographic characteristics of both subjects with dementia and family members and problems of management, rehabilitation, and care that subjects experienced during the first 4 weeks of the coronavirus quarantine in our setting, anxiety, burnout and stress that a family caregiver experienced.	Increased stress caregiver, half of the subjects with dementia experienced increased anxiety and that most family members discontinued all sort of cognitive and physical therapies	Community	April 2020
Dassel et al., 2021	USA	82 carers (about carers)	Access to care	Mixed	Quantitative survey and semi-structured qualitative telephone interviews	Some of family carers revisited or updated advance directives of care recipients and/or had some type of contingency plan if they were to become ill 3 themes: Interruption of Care Plans, focused on the present, navigating without a compass	Community	Surveys: May–June 2020; telephone interviews: July–September 2020
Giebel et al., 2020	UK	14 unpaid carers, 7 people with dementia (about people with dementia and carers)	Service usage	Qualitative interviews	Co-produced questions about inequalities in accessing post-diagnostic care	4 themes: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support.	Community	January–March 2020
Giebel et al., 2021a (2 papers)	UK	569 participants, 61 people with dementia, 285 unpaid carers, and 223 older adults (about people with dementia and carers)	Mental wellbeing, Service usage	Quantitative 3-time point survey	Co-produced survey on service usage, General Health Questionnaire, Short version of the Warwick-Edinburgh Mental Wellbeing Scale, Patient Health Questionnaire	Social support service use significantly reduced since pandemic; Higher variations in service usage linked to increased levels of anxiety in people with dementia, and lower levels of mental well-being in unpaid carers.	Community	April–August 2020
Giebel et al., 2021b/ Hanna et al. (5 papers)	UK	50 baseline participants (42 unpaid carers, 8 people with dementia), 20 follow-up interviews (16 unpaid carers, 4 people with dementia) (about people with dementia and carers)	Service usage, Cognition, Everyday functioning, Mental wellbeing	Qualitative interviews	Co-produced questions about service usage before and since the pandemic	People with dementia were reported to deteriorate faster, struggled accessing social support services, and experienced difficulties deciding about whether to receive paid home care. Inequalities in accessing care noted. Mental health issues noted for people with dementia and unpaid carers.	Community	April–July 2020
Helvaci Yilmaz et al., 2021	Turkey	54 individuals diagnosed with AD and carers (about people with dementia and carers)	Carer burden, cognition, mental health	Quantitative	Survey prepared by the neurology department of Medipol University Istanbu	AD worsening symptom was forgetfulness and agitation. The carers thought that something terrible would happen to the patient and felt they could not find time for themselves. Drug rejection increased the burden twofold	Community	April 1st–May 30rd 2020
Hwang et al., 2021	USA	34 carers (about carers)	Mental health, care burden	Quantitative	Questions were developed by the authors based on the previous literature, generalized Anxiety Disorder-7, Center for Epidemiologic Studies Depression Scale, Clinical Dementia Rating (CDR), Barthel Activities of Daily Living Index, Neuropsychiatric Inventory (NPI).	Worrying about spreading covid-19 to the people with dementia, taken on additional caregiving duties for others in their family since covid-19, and reported one or more anxiety symptoms	Community	June 13th, 2020–August 28th, 2020.
Kostyal et al., 2021	Hungary	370 family carers of people with dementia (about carers)	Access to care, care burden, mental health	Quantitative	Online survey – socio-demographic background, caregiver-care recipient relationship, caregiver’s responsibilities: caregiver’s self-reported physical, general and mental health status, difficulties posed by the pandemic	A deterioration in their financial status. A decline in general and mental health, family carers’ burden increased	Community	May–July 2020
Losada et al., 2021	Spain	88 family carers (about family caregiver)	Care burden, Cognition, Mental health	Quantitative	Telephone survey - Spanish version of GDS and Barthel Index- Behavioural and psychological symptoms, Carers’ depressive and anxiety symptomatology, carers’ emotions, family and economy during COVID	Increased negative emotions, conflicts, and thoughts on giving up on caregiving. Some carers had increased positive emotions.	Community	June 2020–Middle of March 2021
Ng et al., 2020	Singapore	50 people with Mild FTD and 50 people with mild AD dementia (about people with dementia and carers)	Access to care, behaviour	Quantitative	Phone based Survey – to identify major themes of particular concern to patient–carers dyads of FTD.	Preliminary findings Demonstrate that people with FTD have significant worsening in behaviour and social cognition, as well as suffer greater negative consequences from disruption to healthcare services compared to people with AD.	Community	N/A
Panerai et al., 2016	Italy	128carers of people with dementia (about people with dementia and carers)	Care burden, cognition, mental health	Quantitative	The Neuropsychiatric Inventory Questionnaire (NPI-Q) and the Caregiver Burden Inventory (CBI)	Increased risk for burning out of carers, Neuropsychiatric symptoms in people with dementia significantly increased as well.	Community	April 14th and May 16th 2020
Pongan et al., 2021	France	Carers of people with dementia (about people with dementia and carers)	Care burden, behaviour, Mental health	Quantitative	Cross-sectional online survey, The Checklist for Reporting Results of Internet E-Surveys (CHERRIES), the GAD-7 scale (The General Anxiety Disorder-7), The CES-D scale (Center for Epidemiologic Studies- Depression)	Impact on behavioural disorders in people with dementia and these disorders are associated with poorer mental health of carers.	Community	15th April–15th June 2020
Rainero et al., 2020	Italy	97 dementia centers, 4913 people with dementia (about people with dementia and carers)	Care burden, mental health	Quantitative	Survey, Clinical Dementia Rating (CDR)	Carers reported a high increase in anxiety, depression, and distress. Acute worsening of clinical symptoms in people with dementia	Community	April 2020
Rajagopalan et al., 2022	India	104 dementia and their carers (about people with dementia and carers)	Care burden, behaviour, mental health, access to care	Mixed method	Validated instruments and a semi-structured interview guide	Worsening of behaviour, problems in accessing care, disruptions in functional activities and struggles in enforcing infection prevention contributing to caregiver distress.	Community	15 May and 25 June 2020.
Rising et al., 2022	USA	25 people with dementia and Caregiver (about people with dementia and carers)	Care burden, cognition, mental health	Qualitative	Semi-structured interviews	Four themes emerging: disruption of socialization, fear and risk mitigation, coping strategies, and caregiver burden	Community	August–November 2020
Rusowicz et al., 2021	Poland	85 carers (about caregiver)	Care burden, mental health	Quantitative	Questionnaire; 10-item Perceived Stress Scale (PSS-10)	High levels of stress, PSS-10 correlated with the deterioration of illness during Covid-19, changes in daily functioning, and concerns about both the health of the charge and caregiver	Community	N/A
Savla et al., 2021	USA	53 family carers of persons with dementia (about caregiver)	Cognition, Care burden, access to care	Mixed	Structured survey and open-ended questions – people with dementia’s living arrangement and cgs’ relationship with people with dementia, age, perception of income adequacy, and race/ethnicity, people with dementia’s memory-related behaviour problems, cgs rated three items exhausted, more things to do than can handle, didn’t have time for self) on a 4-point Likert scale from 0 (not at all) to 3 (extremely)	Carers who were more concerned about the COVID-19 pandemic were at greater odds of experiencing high role overload than those who recognized positive aspects of the pandemic. Home care services had reduced.	Community	April 14 and May 1
Sriram et al., 2021	UK	23 carers (about carers)	Care burden, access to care, mental health	Qualitative	Semi-structured Interview	Three main themes—Changes to daily life, impact on carer health and wellbeing and reduced support from health and social support networks.	Community	N/A
Tam et al., 2021	Canada	498 participants carers and people with dementia (about people with dementia and carers)	Carer burden, health services, mental health	Quantitative	Survey – themes: (1) information and resource needs, (2) Caring for someone living with dementia during the COVID-19 pandemic (specific to care partner surveys), (3) mental health and well-being needs, 4) the use of technology for social connection during the pandemic.	Reported several serious concerns, inability to visit the person that they care for in long-term or palliative care. Reported that the pandemic increased their levels of stress overall and that they felt lonelier and more isolated than they did before the pandemic.	Community	June 8, 2020, and August 19, 2020.
Tsapanou et al., 2021	Greece	339 carers (about carers and people with dementia)	Carer burden	Quantitative, Exploratory sequential mixed-methods design – Quantitative	Online questionnaire was created regarding both changes of the patient they take care of, and changes to their own burden	Significant decline, both in an overall aspect of the people with dementia, and in specific domains (mostly communication and mood). carers -significantly increased physical and psychological burden	Community	November 2020–April 2021
Tuijt et al., 2021 (2 papers)	UK	30 people living with dementia, 31 Family carer (about people with dementia and carers)	Cognition, care burden Access to care	Qualitative	Interviews were semi structured Semi-structured interviews	1) awareness of restrictions, 2) restructuring caring relationships to manage covid-19 risk, 3) protective factors, 4) the psychological and cognitive impact of restrictions, and 5) the importance of social engagement. Three main themes were derived relating to: proactive care at the onset of covid-19 restrictions; avoidance of healthcare settings and services; and difficulties with remote healthcare encounters.	Community	May–August 2020
Tulloch et al., 2021	Australia	26 carers of people with dementia (about carers)	Access to care, positive caregiver experiences	Qualitative	Semi-structured interviews	Pre-pandemic care: (1) focusing on the people with dementia and (2) working together during-pandemic care: (1) respecting personhood; (2) connecting with virtues and values; (3) improving relationships; (4) seeking and receiving support; (5) prioritizing self-care; (6) being protective and proactive; (7) making practical changes. Moving forward from COVID-19: (1) strengthening commitment to the people with dementia (2) looking after my own needs, and (3) considering practical requirements.	Community	June 25 and August 11, 2020.
Vaitheswaran et al., 2020	India	31 carers (about carers)	Care burden, carers need	Qualitative	Semi structured interviews	Themes: unique to the carers that directly related to their caregiving role, while the second set did not relate directly to their caregiving role, needs, provision of support to meet needs	Community	1st September 2019 and 29th February 2020
Werner et al., 2021	Israel	73 Israeli family carers of Persons with dementia (about carers)	Behaviour, access to care	Quantitative cross-sectional study	Online survey – Problematic Behaviour Scale, loneliness, cognitive function, fear	Feelings of burden Were associated with carers’ forgone care and feelings of loneliness and perceptions of the care-receiver’s cognitive functioning were associated with care-receivers’ forgone care.	Community	25 June 2020 And closed on 25 July 2020.
West et al., 2021	UK	15 participants (people with dementia and Carers)	Health, access to care, Mental health, care burden	Qualitative	Semi structured qualitative Interviews.	8 key themes, with subthemes: Fear and anxiety, food and eating (encompassing food Shopping and eating patterns), isolation and identity, Community and social relationships, adapting to covid-19, social isolation and support structures, and medical interactions.	Community	N/A
Zucca et al., 2021	Italy	87 dementia centres, 4710 caregiver – people with dementia pairs (about carers)	Care burden, Mental Health	Quantitative	Survey: six Questions tapping the following stress symptoms: (1) depression, (2) anxiety, (3) anguish, (4) irritability, (5) overwhelmed/helplessness (OH), and (6) isolation/abandonment (IA).	Increased stress, anxiety, concerned for people with dementia’ health, sense of isolation and abandonment.	Community	April 14 to April 24, 2020

Table 2. Quality assessment ratings for quantitative studies.

Research paper	Overall Score
Alexopoulo et al., 2021	1.00
Altieri; Santangelo, 2021	0.89
Azevedo et al., 2021	0.94
Borelli et al., 2021	1.00
Borg et al., 2021	0.94
Borges-Machado et al., 2020	0.94
Boutoleau-Bretonnière et al., 2020	1.00
Carcavilla et al., 2021	0.67
Carpinelli Mazzi et al., 2020	0.78
Cohen et al., 2020a	1.00
Cohen et al., 2020b	0.89
Dassel et al., 2021	0.71
El haj et al., 2020	0.83
El haj et al., 2020	0.83
Giebel et al., 2020 (2 papers)	1.00
Helvaci yilmaz et al., 2021	0.94
Hwang et al., 2021	1.00
Kostyal et al., 2021	0.89
Losada et al., 2021	1.00
Ng et al., 2020	0.78
Panerai et al., 2016	1.00
Pongan et al., 2021	0.94
Rainero et al., 2020	1.00
Rajagopalan et al., 2022	0.94
Rusowicz et al., 2021	0.94
Savla et al., 2021	0.82
Tam et al., 2021	0.89
Tsapanou et al., 2021	0.89
Werner et al., 2021	0.94
Zucca et al., 2021	0.94

Table 3. Quality assessment ratings for qualitative studies.

Research paper	Overall Score
Dassel et al., 2021	0.70
Giebel et al., 2020	0.95
Giebel et al./ Hanna et al., 2021a (5 papers)	0.90
Rajagopalan et al., 2022	0.85
Rising et al., 2022	0.65
Savla et al., 2021	0.75
Sriram et al., 2021	1.00
Talbot & Briggs, 2021	0.90
Tuijt et al., 2021 (2 papers)	0.90
Tulloch et al., 2021	0.85
Vaitheswaran et al., 2020	0.65
West et al., 2021	0.90

Alexopoulos, P., Soldatos, R., Kontogianni, E., Frouda, M., loanna Aligianni, S., Skondra, M., Passa, M., Konstantopoulou, G., Stamouli, E., Katirtzoglou, E., Politis, A., Economou, P., Alexaki, M., Siarkos, K., & Politis, A. (2021). COVID-19 crisis effects on caregiver distress in neurocognitive disorder. Journal of Alzheimer’s Disease, 79(1), 459–466. https://doi.org/10.3233/JAD-200991

 PubMedGoogle Scholar

Altieri, M., & Santangelo, G. (2021). The psychological impact of COVID-19 pandemic and lockdown on caregivers of people with dementia. The American Journal of Geriatric Psychiatry, 29(1), 27–34.

 PubMed Web of Science ®Google Scholar

Azevedo, L. V. D. S., Calandri, I. L., Slachevsky, A., Graviotto, H. G., Vieira, M. C. S., Andrade, C. B. d., Rossetti, A. P., Generoso, A. B., Carmona, K. C., Pinto, L. A. C., Sorbara, M., Pinto, A., Guajardo, T., Olavarria, L., Thumala, D., Crivelli, L., Vivas, L., Allegri, R. F., Barbosa, M. T., … Caramelli, P. (2021). Impact of social isolation on people with dementia and their family caregivers. Journal of Alzheimer’s Disease, 81(2), 607–617. https://doi.org/10.3233/JAD-201580

 PubMed Web of Science ®Google Scholar

Borelli, W. V., Augustin, M. C., de Oliveira, P. B. F., Reggiani, L. C., Bandeira-de-Mello, R. G., Schumacher-Schuh, A. F., Chaves, M. L. F., & Castilhos, R. M. (2021). Neuropsychiatric symptoms in patients with dementia associated with increased psychological distress in caregivers during the COVID-19 pandemic. Journal of Alzheimer’s Disease, 80(4), 1705–1712. https://doi.org/10.3233/JAD-201513

 PubMedGoogle Scholar

Borg, C., Rouch, I., Pongan, E., Getenet, J. C., Bachelet, R., Herrmann, M., Bohec, A.-L., Laurent, B., Rey, R., & Dorey, J.-M. (2021). Mental health of people with dementia during COVID-19 pandemic: What have we learned from the first wave? Journal of Alzheimer’s Disease, 82(4), 1531–1541. https://doi.org/10.3233/JAD-210079

 PubMedGoogle Scholar

Borges-Machado, F., Barros, D., Ribeiro, O., & Carvalho, J. (2020). The effects of COVID-19 home confinement in dementia care: Physical and cognitive decline, severe neuropsychiatric symptoms and increased caregiving burden. American Journal of Alzheimer’s Disease and Other Dementias, 35, 1533317520976720.

 Google Scholar

Boutoleau-Bretonnière, C., Pouclet-Courtemanche, H., Gillet, A., Bernard, A., Deruet, A.-L., Gouraud, I., Lamy, E., Mazoué, A., Rocher, L., Bretonnière, C., & El Haj, M. (2020). Impact of confinement on the burden of caregivers of patients with the behavioral variant of frontotemporal dementia and Alzheimer disease during the COVID-19 crisis in France. Dementia and Geriatric Cognitive Disorders Extra, 10(3), 127–134. https://doi.org/10.1159/000511416

 PubMed Web of Science ®Google Scholar

Carcavilla, N., Pozo, A. S., Gonzalez, B., Moral-Cuesta, D., Roldan, J. J., Erice, V., & Remirez, A. G. (2021). Needs of dementia family caregivers in Spain during the COVID-19 pandemic. Journal of Alzheimer’s Disease, 80(2), 533–537.

 PubMedGoogle Scholar

Carpinelli Mazzi, M., Iavarone, A., Musella, C., De Luca, M., de Vita, D., Branciforte, S., Coppola, A., Scarpa, R., Raimondo, S., Sorrentino, S., Lualdi, F., & Postiglione, A. (2020). Time of isolation, education and gender influence the psychological outcome during COVID-19 lockdown in caregivers of patients with dementia. European Geriatric Medicine, 11(6), 1095–1098. https://doi.org/10.1007/s41999-020-00413-z

 PubMed Web of Science ®Google Scholar

Cohen, G., Russo, M. J., Campos, J. A., & Allegri, R. F. (2020a). COVID-19 Epidemic in Argentina: Worsening of behavioral symptoms in elderly subjects with dementia living in the community. Frontiers in Psychiatry, 11, 866. https://doi.org/10.3389/fpsyt.2020.00866

 PubMedGoogle Scholar

Cohen, G., Russo, M. J., Campos, J. A., & Allegri, R. F. (2020b). Living with dementia: Increased level of caregiver stress in times of COVID-19. International Psychogeriatrics, 32(11), 1377–1381. https://doi.org/10.1017/S1041610220001593

 PubMed Web of Science ®Google Scholar

Dassel, K. B., Towsley, G. L., Utz, R. L., Ellington, L., Terrill, A., Scammon, D., Bristol, A. A., Thompson, A., & Mickens, M. (2021). A limited opportunity: COVID-19 and promotion of advance care planning. Palliative Medicine Reports, 2(1), 194–198. https://doi.org/10.1089/pmr.2021.0013

 PubMedGoogle Scholar

Giebel, C., Hanna, K., Cannon, J., Eley, R., Tetlow, H., Gaughan, A., Komuravelli, A., Shenton, J., Rogers, C., Butchard, S., Callaghan, S., Limbert, S., Rajagopal, M., Ward, K., Shaw, L., Whittington, R., Hughes, M., & Gabbay, M. (2020). Decision-making for receiving paid home care for dementia in the time of COVID-19: A qualitative study. BMC Geriatrics, 20(1), 333. https://doi.org/10.1186/s12877-020-01719-0

 PubMed Web of Science ®Google Scholar

Giebel, C., Hanna, K., Rajagopal, M., Komuravelli, A., Cannon, J., Shenton, J., Eley, R., Gaughan, A., Callaghan, S., Tetlow, H., Limbert, S., Whittington, R., Rogers, C., Ward, K., Shaw, L., Butchard, S., & Gabbay, M. (2021a). The potential dangers of not understanding COVID-19 public health restrictions in dementia: “It’s a groundhog day – every single day she does not understand why she can’t go out for a walk”. BMC Public Health, 21(1), 762. https://doi.org/10.1186/s12889-021-10815-8

 PubMed Web of Science ®Google Scholar

Giebel, C., Pulford, D., Cooper, C., Lord, K., Shenton, J., Cannon, J., Shaw, L., Tetlow, H., Limbert, S., Callaghan, S., Whittington, R., Rogers, C., Komuravelli, A., Rajagopal, M., Eley, R., Downs, M., Reilly, S., Ward, K., Gaughan, A., … Gabbay, M. (2021b). COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: A UK longitudinal survey. BMJ Open, 11(1), e045889. https://doi.org/10.1136/bmjopen-2020-045889

 PubMed Web of Science ®Google Scholar

Helvaci Yilmaz, N., Polat, B., Ermis, A., & Hanoglu, L. (2021). Clinical deterioration of Alzheimer’s disease patients during the Covid-19 pandemic and caregiver burden. Journal of Experimental and Clinical Medicine, 38(3), 255–259. https://doi.org/10.52142/omujecm.38.3.9

 Google Scholar

Hwang, Y., Connell, L. M., Rajpara, A. R., & Hodgson, N. A. (2021). Impact of COVID-19 on dementia caregivers and factors associated with their anxiety symptoms. American Journal of Alzheimer’s Disease and Other Dementias, 36, 15333175211008768.

 Web of Science ®Google Scholar

Kostyál, L., Széman, Z., Almási, V., Fabbietti, P., Quattrini, S., Socci, M., Lamura, G., & Gagliardi, C. (2021). Impact of the COVID-19 pandemic on family carers of older people living with dementia in Italy and Hungary. Sustainability, 13(13), 7107. https://doi.org/10.3390/su13137107

 Google Scholar

Losada, A., Vara-Garcia, C., Romero-Moreno, R., Barrera-Caballero, S., Pedroso-Chaparro, M. D. S., Jimenez-Gonzalo, L., Fernandes-Pires, J., Cabrera, I., Gallego-Alberto, L., Huertas-Domingo, C., Mérida-Herrera, L., Olazarán-Rodríguez, J., & Marquez-Gonzalez, M. (2021). Caring for relatives with dementia in times of COVID-19: Impact on caregivers and care-recipients. Clinical Gerontologist, 45, 71–85. https://doi.org/10.1080/07317115.2021.1928356

 PubMedGoogle Scholar

Ng, K. P., Chiew, H. J., Hameed, S., Ting, S. K. S., Ng, A., Soo, S. A., Wong, B. Y. X., Lim, L., Yong, A. C. W., Mok, V. C. T., Rosa-Neto, P., Dominguez, J., Kim, S. Y., Hsiung, G. Y. R., Ikeda, M., Miller, B. L., Gauthier, S., & Kandiah, N. (2020). Frontotemporal dementia and COVID-19: Hypothesis generation and roadmap for future research. Alzheimers Dement (N Y), 6(1), e12085.

 PubMedGoogle Scholar

Panerai, S., Prestianni, G., Musso, S., Muratore, S., Tasca, D., Musso, S., Catania, V., Ruggeri, F., Raggi, A., Gelardi, D., Ferri, R. (2016). The impact of COVID-19 confinement on the neurobehavioral manifestations of people with Major Neurocognitive Disorder and on the level of burden of their caregivers. Life Span and Disability, 23(2), 303–320. http://www.lifespanjournal.it/client/abstract/ENG371_6.%20Panerai.pdf

 Google Scholar

Pongan, E., Dorey, J.-M., Borg, C., Getenet, J. C., Bachelet, R., Lourioux, C., Laurent, B., Rey, R., & Rouch, I. (2021). COVID-19: Association between increase of behavioral and psychological symptoms of dementia during lockdown and caregivers’ poor mental health. Journal of Alzheimer’s Disease, 80(4), 1713–1721. https://doi.org/10.3233/JAD-201396

 PubMedGoogle Scholar

Rainero, I., Bruni, A. C., Marra, C., et al. (2020). The impact of COVID-19 quarantine on patients with dementia and family carers: A nation-wide survey. Frontiers in Aging Neuroscience, 12, 625781.

 PubMed Web of Science ®Google Scholar

Rajagopalan, J., Arshad, F., Hoskeri, R. M., Nair, V. S., Hurzuk, S., Annam, H., Varghese, F., Br, R., Dhiren, S. R., Ganeshbhai, P. V., Kammammettu, C., Komaravolu, S., Thomas, P. T., Comas-Herrera, A., & Alladi, S. (2022). Experiences of people with dementia and their caregivers during the COVID-19 pandemic in India: A mixed-methods study. Dementia (London), 21(1), 214–235. https://doi.org/10.1177/14713012211035371

 PubMedGoogle Scholar

Rising, K. L., Salcedo, V. J., Amadio, G., Casten, R., Chang, A., Gentsch, A., O’Hayer, C. V., Sarpoulaki, N., Worster, B., & Gerolamo, A. M. (2022). Living through the pandemic: The voices of persons with dementia and their caregivers. Journal of Applied Gerontology, 41(1), 30–35. https://doi.org/10.1177/07334648211036399

 PubMed Web of Science ®Google Scholar

Rusowicz, J., Pezdek, K., & Szczepańska-Gieracha, J. (2021). Needs of Alzheimer’s charges’ caregivers in Poland in the covid-19 pandemic-an observational study. International Journal of Environmental Research and Public Health, 18(9), 4493. https://doi.org/10.3390/ijerph18094493

 PubMed Web of Science ®Google Scholar

Savla, J., Roberto, K. A., Blieszner, R., McCann, B. R., Hoyt, E., & Knight, A. L. (2021). Dementia caregiving during the "stay-at-home" phase of COVID-19 pandemic. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 76(4), e241–e245. https://doi.org/10.1093/geronb/gbaa129

 PubMed Web of Science ®Google Scholar

Sriram, V., Jenkinson, C., & Peters, M. (2021). Impact of COVID-19 restrictions on carers of persons with dementia in the UK: A qualitative study. Age and Ageing, 50(6), 1876–1885. https://doi.org/10.1093/ageing/afab156

 PubMed Web of Science ®Google Scholar

Tam, M. T., Dosso, J. A., & Robillard, J. M. (2021). The impact of a global pandemic on people living with dementia and their care partners: Analysis of 417 lived experience reports. Journal of Alzheimer’s Disease, 80(2), 865–875.

 PubMed Web of Science ®Google Scholar

Tsapanou, A., Zoi, P., Kalligerou, F., Blekou, P., & Sakka, P. (2021). The effect of prolonged lockdown due to COVID-19 on Greek demented patients of different stages and on their caregivers. Journal of Alzheimer’s Disease, 83(2), 907–913. https://doi.org/10.3233/JAD-210702

 PubMed Web of Science ®Google Scholar

Tuijt, R., Frost, R., Wilcock, J., Robinson, L., Manthorpe, J., Rait, G., & Walters, K. (2021). Life under lockdown and social restrictions - The experiences of people living with dementia and their during the COVID-19 pandemic in England. BMC Geriatrics, 21(1), 301.

 PubMed Web of Science ®Google Scholar

Tuijt, R., Rait, G., Frost, R., Wilcock, J., Manthorpe, J., & Walters, K. (2021). Remote primary care consultations for people living with dementia during the COVID-19 pandemic: Experiences of people living with dementia and their. British Journal of General Practice, 71(709), e574–e582.

 PubMed Web of Science ®Google Scholar

Vaitheswaran, S., Lakshminarayanan, M., Ramanujam, V., Sargunan, S., & Venkatesan, S. (2020). Experiences and needs of caregivers of persons with dementia in India during the COVID-19 pandemic – A qualitative study. The American Journal of Geriatric Psychiatry, 28(11), 1185–1194.

 PubMed Web of Science ®Google Scholar

Werner, P., Tur-Sinai, A., & AboJabel, H. (2021). Examining dementia family caregivers’ forgone care for general practitioners and medical specialists during a COVID-19 lockdown. International Journal of Environmental Research and Public Health, 18(7), 3688.

 PubMed Web of Science ®Google Scholar

Zucca, M., Isella, V., Lorenzo, R. D., Marra, C., Cagnin, A., Cupidi, C., Bonanni, L., Laganà, V., Rubino, E., Vanacore, N., Agosta, F., Caffarra, P., Sambati, R., Quaranta, D., Guglielmi, V., Appollonio, I. M., Logroscino, G., Filippi, M., Tedeschi, G., Bruni, A. C.,& SINdem COVID-19 Study Group. (2021). Being the family caregiver of a patient with dementia during the coronavirus disease 2019 lockdown. Frontiers in Aging Neuroscience, 13, 653533. https://doi.org/10.3389/fnagi.2021.653533

 PubMed Web of Science ®Google Scholar

Talbot, C. V., & Briggs, P. (2021). ‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia. Age and Ageing, 50(3), 657–663. https://doi.org/10.1093/ageing/afab012

 PubMed Web of Science ®Google Scholar

Tulloch, K., McCaul, T., & Scott, T. L. (2021). Positive aspects of dementia caregiving during the COVID-19 pandemic. Clinical Gerontologist, 45(1), 86–96. https://doi.org/10.1080/07317115.2021.1929630

 PubMedGoogle Scholar

West, E., Nair, P., Barrado-Martin, Y., Walters, K. R., Kupeli, N., Sampson, E. L., & Davies, N. (2021). Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups. BMJ Open, 11(5), e050066. https://doi.org/10.1136/bmjopen-2021-050066

 PubMedGoogle Scholar