Table 1.
The main characteristics of included studies in the review.
| Author, year | Study design | Study sample | Measures | Outcome | Comments | Timeline | Grade |
|---|---|---|---|---|---|---|---|
| Cohen et al. (2020) | Cross-sectional non-interventional study | 80 family caregivers of AD or related dementia patients | Online questionnaire based on a visual analog scale to test burden | - Family was the primary provider of care in 65% - COVID-19 confinement increased caregiver's stress independently of the dementia stage, but those caring for severe cases had more stress compared to milder forms of the disease - 50% patients with dementia experienced increased anxiety - Most family members discontinued all sort of cognitive and physical therapies - Family members' main concerns: - Severe dementia case: fear of absence of the paid caregiver during the epidemic - Mild dementia cases: fear of spreading the disease while assisting patients |
Limitations: - Small sample size - p-values not adjusted for multiple comparisons - Possible high rates of type I error - No validated instruments to measure burden of care or anxiety |
Argentine—April 2020—first lockdown | * |
| Tsapanou et al. (2021) | Cross-sectional non-interventional study | 204 caregivers of people with MCI or dementia | Self-reported questionnaire for caregivers regarding the status of patients and their own. Domains: changes in physical, psychological and routine activities with possible answers: “not at all,” “some” and “a lot” | - Significant overall decline of the people with MCI/dementia - Main decline in: communication, mood, movement, and compliance with the new measures - Caregivers reported a great increase in their psychological and physical burden |
Limitations: - Self-reported measure, small sample size - Short period of time for the results reported - Results might be affected by the caregiver's increased workload •Strengths: - First study regarding elder Mediterranean population including specific questions about the patients with mci/dementia and their caregivers |
Greece, Feb-June 2020—first lockdown | ** |
| Lai et al. (2020) | Controlled not randomized interventional prospective study | 60 dyads of elderly NCD patient-caregiver recruited through an activity center | Neurocognitive functioning, behavioral and psychological problems, and QoL were assessed in the care-recipient with NCD by MoCA, RMBPC, and QoL-AD | - Telemedicine by video conference was associated with improved resilience and wellbeing to both people with NCD and their caregivers at home compared to the telephone-only group | Limitations: - No head-to-head comparison between video conferences and phone calls with matching contact time - The switch from phone calls to video conference likely had affected the content, style, and manner of the delivery by the health care providers, and these should have been recorded and subjected to analysis to isolate potential mediator variables |
Hong-Kong—March-May 2020—first lockdown | *** |
| Carpinelli Mazzi et al. (2020) | Cross-sectional observational study | 239 caregivers of patients with dementia | SDS, SAS, and PSS by telephone interview or online self-compilation | - Education was a protective factor against anxiety and depression for caregivers - Length of isolation was associated with the higher SAS and SDS scores. - Women reported higher SAS and SDS mean scores than men - A marked reduction of health services was observed in all patients |
Limitations: - SAS not validated in Italian language - No validation of any of the measures for telephone interviews |
Italy, first lockdown | ** |
| Giebel et al. (2020a) | Cross-sectional observational qualitative study | Unpaid carers (n = 42) and PLWD (n = 8) |
The semi-structured interviews were conducted using a topic guide, containing questions about the participant's service use before and after the COVID-19 outbreak and governmental restrictions | - A significant reduction in social support service usage since the outbreak emerged - Thematic analysis identified three overarching themes: loss of control, uncertainty, and adapting and having to adapt to the new normal - Carers and PLWD were greatly affected by the sudden removal of social support services, and concerned about when services would re-open - Carers worried about whether the person they cared for would still be able to re-join social support services |
Limitations: - Sample size heterogeneity and number; not validated assessment |
UK—April 2020—first lockdown | * |
| Giebel et al. (2020b) | Cross-sectional observational qualitative study | 569 participants completed the survey (61 people with dementia, 285 unpaid carers, and 223 older adults) | SWEMWBS, GAD-7, PHQ-9 | - Higher variations in social support service hours significantly predicted increased levels of anxiety in people with dementia and older adults, and lower levels of mental well-being in unpaid carers and older adults | Limitations: - Sample size heterogeneity and number - Patient enrollment procedure |
UK—April-May 2020—first lockdown | *** |
| Oppo et al. (2020) | Cross-sectional observational qualitative study | 32 patients with PD/caregiver dyads | - Patients: UPDRS, NMSS QUIP-RS, and pDQ-8 - Carers: ZBI - Patients and carers: HADS and verbal rating scale (0–6) to measure changes in stress levels |
- Patients experiencing increased stress level during lockdown had worse NMSS and HADS scores - Worse NMSS in patients associated to higher stress among carers - UPDRS-II score not associated with higher stress levels in patients/carers - Patients with increased stress had significant worse mood/cognition score of NMSS |
Limitation: - Small sample size and the use of telephone interviews - Use of a non-validated outcome measure (verbal rating scale) |
Italy—not provided 2020—first lockdown | ** |
| Rainero et al. (2021) | Cross-sectional observational qualitative multicentric study | −5,321 caregivers of patients regularly followed - 4,913 patients with dementia (3372 AD; 360 DLB; 415 FTD; 766 VD) |
- Semi-structured, self-made interview gathering demographic and clinical data from patient and caregiver - CDR |
- According to family caregivers, social isolation, and physical restraint caused a worsening in cognitive function (55% of patients, mainly DLB and AD), an aggravation of several behavioral symptoms (52% patients), and a worsening in motor function (37% patients) and onset of new symptoms (26% patients) - Caregivers reported a high increase in anxiety, depression, distress, and burden |
Limitation: - Data only regard patients with dementia living at home (data cannot be generalized to institutionalized patients) - Cross-sectional study - Not possible to administer face-to-face standardized neuropsychological - Tests |
Italy—April 2020—first lockdown | **** |
| West et al. (2021) | Cross-sectional observational qualitative study | 15 participants: 11 family carers and four persons living with dementia | Semistructured qualitative interviews conducted remotely over telephone or via secure video technologies | - Eight 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 - Fear and anxiety formed an overarching theme that encompassed all others |
Limitation: - Study focused on south Asian and afro-Caribbean groups and views may not be generalizable to other minority groups. •Strengths: - Study of BAME communities, including persons with dementia and their carers - Analysis performed by a different group - Analysis with an iterative constructivist approach and thematically codification |
UK—May 2020—first lockdown | * |
| Tuijt et al. (2021) | Cross-sectional observational qualitative study | 30 people with dementia living in their own homes and 31 family carers | Interviewed via video or telephone call | - Five main themes: awareness of restrictions, restructuring caring relationships to manage COVID-19 risk, protective factors, the psychological and cognitive impact of restrictions, and the importance of social engagement - People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalized risk-appraisal of their own actions - Patients reported negative psychological and cognitive effects due to the imposed restrictions (e.g., increased apathy, irritability, or anxiety) fuelled by lack of social engagement |
Limitation: - Difficulty communicating through telephone or video calls |
UK—March-July-2020—first lockdown | ** |
| Suzuki et al. (2021) | Cross-sectional observational qualitative study | 100 patients with PD and their caregivers/spouses | HADS and SF-8 | The study reveals the negative Impact of the COVID-19 pandemic on health-related QoL and its determinants in PD patients and their caregivers | Limitation: - Retrospective questionnaire-based - Changes in motor symptoms after the outbreak of COVID-19 were not assessed by means of clinical examination by neurologists |
Japan, June and December 2020—first lockdown | ** |
| Azevedo et al. (2021) | Cross-sectional observational qualitative study | 321 dyadic interviews were conducted to patients and caregivers | Two semi-structured questionnaires via telephone to family caregivers of people diagnosed with dementia | - Significant decline in memory function among 53% of people with dementia - 31% of individuals with dementia felt sadder and 37% increased anxiety symptoms. Symptoms of anxiety were greater in individuals with mild to moderate dementia; symptoms of agitation were greater in individuals with severe dementia - Compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia - Caregivers reported feeling more tired and overwhelmed and these symptoms were also influenced by the severity of dementia |
Limitation: - Interviews carried out by telephone - Countries experiencing different moments of the pandemic |
Argentine, Brazil, Chile—May to July 2020—first lockdown | ** |
| Tuijt et al. (2021) | Cross-sectional observational qualitative study | 30 patients living with dementia and 31 carers | Semi-structured interviews with a background in psychology and dementia conducted remotely by telephone or video call | - The following three themes were identified: - Proactive care at the onset of COVID-19 restrictions - Avoidance of healthcare settings and services - Difficulties with encounters - People living with dementia and their carers felt check-up calls were reassuring but limited in scope and content. Some avoided healthcare services, wishing to minimize COVID-19 risk or reduce NHS burden, or encountering technological barriers - Difficulties in remote consultations included lack of prompts to remember problems, dealing with new emerging difficulties, rescheduling/missed calls, and inclusion of the voice of the person with dementia |
Limitations: - Sample size - The median year of diagnosis (2019) was relatively recent |
UK, May-August 2020—first lockdown | * |
| Macchi et al. (2021) | Multicenter, clinical trial of community-based | 108 patients with PD, AD or related disorders and 90 caregivers | Semi-structured interviews, open-ended survey responses, medical record documentation, and participant-researcher communications | - Four main themes emerged: disruptions to delivery of healthcare and other supportive services; increased symptomatic and psychosocial needs; increased caregiver burden; and limitations of telecommunications when compared to in-person contact These themes interacted and intersected | Limitation: - Cohort lacks diversity regarding race, ethnicity, and was highly educateds |
USA, March-August 2020—first lockdown | *** |
| Hanna et al. (2021) | Cross-sectional observational qualitative study | 4 PLWD and 16 unpaid carers | Semi-structured, follow-up telephone interviews | - Three primary themes emerged: impact on mental health during lockdown; changes to mental health following easing of public health; and the long-term effect of public health measures - The loss of social support services was key in impacting this cohort mentally and emotionally, displaying a need for better psychological support, for both carers and PLWD |
Limitation: - Sample size and few people from BAME background - Interviews could not be conducted face-to-face |
UK, June-July 2020—first lockdown | * |
| Borelli et al. (2021) | Cross-sectional observational qualitative study | 58 patients and caregivers | A structured telephone interview with NPI-Q, ZBI, BDI and BAI | - Frequent patients' neuropsychiatric worsening and caregiver burden - Worsening of cognition was associated with increased caregivers' psychological distress |
Limitations: - Cross sectional design of the study - Lack of previous caregiver scores in the scales may overestimate the pandemic's impact |
Brazil, May-July 2020—first lockdown | ** |
| Tam et al. (2021) | Cross-sectional observational qualitative study | 395 care partners and 22 individuals with lived experiences of dementia | Survey | - Care partners reported a number of serious concerns, including the inability to visit the person that they care for in long-term or palliative care - The pandemic increased their levels of stress overall and felt lonelier and more isolated than they did before the pandemic - The use of technology was reported as a way to connect socially with their loved ones, with the majority of participants connecting with others at least twice per week |
Limitations: - Cross sectional study design |
Canada, June-August 2020—first lockdown | ** |
AD, Alzheimer's disease; BAME, Black, asian and minority ethnic; BPSD, Behavioral and psychological symptoms of dementia; CDR, Clinical dementia rating; DLB, Dementia with lewy bodies; FTD, Frontotemporal dementia; MCI, Mild cognitive impairment; MoCA, Montreal cognitive assessment; NCD, Neurocognitive decline; NMSS, Non-motor symptoms scale; PD, Parkinson's disease; PDQ-8, Parkinson's disease questionnaire-8, PLWD, Person living with dementia; PSS, Perceived stress scale; QoL, Quality of life; qol-ad, Quality of life in alzheimer's disease; QUIPRS, Questionnaire for impulsive-compulsive disorders in parkinson's disease–rating scale; RMBPC, Revised memory and behavior problem checklist; SAS, Zung's self-rating anxiety scale; SDS, Zung's self-rating depression scale; SWEMWBS, Short warwick-edinburgh mental well-being scale; UPDRS, Unified parkinson's disease rating scale; VD, Vascular dementia; ZBI, Zarit burden interview.
Grade score:
*
Very low quality,
**
Low quality,
***
Moderate quality,
****
High quality.