Alexopoulo et al. | 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 | 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. | 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 to July 2020 |
Borelli et al. | 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 to July 2020 |
Borg et al. | 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. | 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. (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. | 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 to June 2020 |
Carpinelli Mazzi et al. | 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. | 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. | 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. | 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. | 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. (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./ 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. | 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. | 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, to August 28th, 2020. |
Kostyal et al. | 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. | 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. | 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. | 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. | 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. | 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. | 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. | 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. | 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. | 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. | 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. | 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. | 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. (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. | 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. | 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. | 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. | 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. | 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 |