The consequences of COVID-19 lockdown for formal and informal resource utilization among home-dwelling people with dementia: results from the prospective PAN.DEM study

Maarja Vislapuu, Renira C Angeles, Line I Berge, Egil Kjerstad, Marie H Gedde, Bettina S Husebo, Maarja Vislapuu, Renira C Angeles, Line I Berge, Egil Kjerstad, Marie H Gedde, Bettina S Husebo

Abstract

Background: COVID-19 isolated home-dwelling people with dementia (PwD) from home care services, respite care, and daytime activities. We aimed to investigate the consequences of these restrictions on informal (family, friends) and formal (homecare staff) resource utilization among co-residing (e.g., spouses) and visiting caregivers (e.g., children).

Methods: 105 PwD (≥65 years old) and their caregivers were included in the prospective PANdemic in DEMentia (PAN.DEM) study, which was initiated when the ongoing stepped-wedge, cluster randomized LIVE@Home.Path trial (N = 438) was temporarily halted due to the pandemic. Primary outcome was change in resource utilization assessed by the Resource Utilization in Dementia Care (RUD) instrument in pre- (12 Dec. 2019 to 11 Mar. 2020) and during the lockdown periods (20 April 2020 to 15 May 2020). Degree of cognitive impairment was assessed by Mini-Mental Status Examination (MMSE), and physical functioning and independent living skills by Physical Self-Maintenance Scale and Lawton Instrumental Activities of Daily Living Scale. Associations between informal and formal care utilization, socio-demographics, and clinical variables were assessed by descriptive statistics and Ordinary Least Squares models (OLS).

Results: Mean age for PwD was 81.8 years; 61% were female; 45.6% lived alone, and the mean MMSE score was 20.8 (SD ± 3.7). PwD with co-residents (44%) were younger (78.4 years) than those who were living alone (84.5 years; P < 0.001). During the first 2 months of lockdown, PwD missed on average 20.5 h of formal care in a month (P < 0.001) leading to an approximately 100% increase in informal care, which was particularly pronounced in personal hygiene (6.9 vs. 11.4 days in a month, P < 0.001) and supervision (9.2 vs. 17.6 days in a month; P < 0.001). Visiting caregivers increased by 1.9 days (SD ± 11.5), but co-residing caregivers increased their number of days providing ADL by approximately 7 days per month (β = 6.9; CI, 0.39-13.1, P < 0.05) after adjusting for PwD and caregiver demographics and clinical variables. Decrease in home nursing care was particularly visible for PwD living alone (- 6.1 vs. -1.3 h per month, P = 0.005). Higher cognitive function (β = - 0.64, CI, - 1.26 - 0.02, P = 0.044) was associated with reduction in home nursing service during the lockdown.

Conclusion: The care situation for PwD changed dramatically in the early phase of the COVID-19 pandemic, especially for those living alone who received less support from homecare services and visiting caregivers. For future crises and the forthcoming post-pandemic period, health authorities must plan better and identify and prioritize those in greatest need.

Trial registration: ClinicalTrials.gov ; NCT04043364 .

Keywords: COVID-19; Caregiver; Dementia; Formal care; Informal care; Resource utilization.

Conflict of interest statement

The authors declare that they have no competing interests. All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf

© 2021. The Author(s).

Figures

Fig. 1
Fig. 1
The LIVE@Home.Path trial timeline, including Pandemic in Dementia (PAN.DEM) study
Fig. 2
Fig. 2
Study design and participant flow

References

    1. Husebø BS, Berge LI. Intensive medicine and nursing home care in times of SARS CoV-2. A Norwegian perspective. Am J Geriatr Psychiatry. 2020;28(7):792–793. doi: 10.1016/j.jagp.2020.04.016.
    1. Organisation for European Economic Co-operation . Beyond Containment: Health systems responses to COVID-19 in the OECD. 2020.
    1. Pashakhanlou AH. Sweden's coronavirus strategy: The Public Health Agency and the sites of controversy. World Medical & Health Policy. 2021. 10.1002/wmh3.449.
    1. Wong SYS, Zhang D, Sit RWS, Yip BHK, RY-n C, CKM W, et al. Impact of COVID-19 on loneliness, mental health, and health service utilisation: a prospective cohort study of older adults with multimorbidity in primary care. Br J Gen Pract. 2020;70(700):e817–ee24. doi: 10.3399/bjgp20X713021.
    1. Askim J, Bergström T. Between lockdown and calm down. Comparing the COVID-19 responses of Norway and Sweden. Local Gov Stud. 2021:1–21. 10.1080/03003930.2021.1964477.
    1. Michalowsky B, Hoffmann W, Bohlken J, Kostev K. Effect of the COVID-19 lockdown on disease recognition and utilisation of healthcare services in the older population in Germany: a cross-sectional study. Age Ageing. 2020;50(2):317–325. doi: 10.1093/ageing/afaa260.
    1. Rosenwohl-Mack A, Dubbin L, Chodos A, Dulaney S, Fang M-L, Merrilees J, et al. Use of Services by People Living Alone With Cognitive Impairment: A Systematic Review. Innov Aging. 2021;5(1):igab004. doi: 10.1093/geroni/igab004.
    1. Topriceanu C-C, Wong A, Moon JC, Hughes AD, Bann D, Chaturvedi N, Patalay P, Conti G, Captur G. Evaluating access to health and care services during lockdown by the COVID-19 survey in five UK national longitudinal studies. BMJ Open. 2021;11(3):e045813. doi: 10.1136/bmjopen-2020-045813.
    1. Gjøra L, Heine Strand B, Bergh S, Borza T, Brækhus A, Engedal K, et al. Current and Future Prevalence Estimates of Mild Cognitive Impairment, Dementia, and Its Subtypes in a Population-Based Sample of People 70 Years and Older in Norway: The HUNT Study. J Alzheimers Dis. 2021;79(Preprint):1–14. doi: 10.3233/JAD-201275.
    1. Ringard Å, Sagan A, Sperre Saunes I, Lindahl AK, World Health Organization Norway: health system review. Health Syst Transit. 2013;15(8):1–162.
    1. Vossius C, Selbæk G, Ydstebø A, Benth J, Godager G, Lurås H, et al. Ressursbruk Og Sykdomsforløp Ved Demens (REDIC) [resource use and disease course in dementia (REDIC)] Alderspsykiatrisk forskningssenter Sykehuset Innlandet HF: Ottestad; 2015.
    1. Boutoleau-Bretonnière C, Pouclet-Courtemanche H, Gillet A, Bernard A, Laure Deruet A, Gouraud I, et al. The effects of confinement on neuropsychiatric symptoms in Alzheimer's disease during the COVID-19 crisis. J Alzheimers Dis. 2020;(Preprint):1–7. 10.3233/JAD-200604.
    1. Cagnin A, Di Lorenzo R, Marra C, Bonanni L, Cupidi C, Laganà V, et al. Behavioral and psychological effects of coronavirus disease-19 quarantine in patients with dementia. Front Psychiatry. 2020;11:916. doi: 10.3389/fpsyt.2020.578015.
    1. Giebel C, Cannon J, Hanna K, Butchard S, Eley R, Gaughan A, Komuravelli A, Shenton J, Callaghan S, Tetlow H, Limbert S, Whittington R, Rogers C, Rajagopal M, Ward K, Shaw L, Corcoran R, Bennett K, Gabbay M. Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study. Aging Ment Health. 2021;25(7):1281–1288. doi: 10.1080/13607863.2020.1822292.
    1. Mazzi MC, Iavarone A, Musella C, De Luca M, de Vita D, Branciforte S, et al. Time of isolation, education and gender influence the psychological outcome during COVID-19 lockdown in caregivers of patients with dementia. Eur Geriatr Med. 2020;11(6):1–4. doi: 10.1007/s41999-020-00413-z.
    1. Giebel C, Lord K, Cooper C, Shenton J, Cannon J, Pulford D, Shaw L, Gaughan A, Tetlow H, Butchard S, Limbert S, Callaghan S, Whittington R, Rogers C, Komuravelli A, Rajagopal M, Eley R, Watkins C, Downs M, Reilly S, Ward K, Corcoran R, Bennett K, Gabbay M. A UK survey of COVID-19 related social support closures and their effects on older people, people with dementia, and carers. Int J Geriatr Psychiatry. 2021;36(3):393–402. doi: 10.1002/gps.5434.
    1. Michalowsky B, Thyrian JR, Eichler T, Hertel J, Wucherer D, Flessa S, Hoffmann W. Economic analysis of formal care, informal care, and productivity losses in primary care patients who screened positive for dementia in Germany. J Alzheimers Dis. 2016;50(1):47–59. doi: 10.3233/JAD-150600.
    1. Bakker C, de Vugt ME, van Vliet D, Verhey FR, Pijnenburg YA, Vernooij-Dassen MJ, et al. The use of formal and informal care in early onset dementia: results from the NeedYD study. Am J Geriatr Psychiatry. 2013;21(1):37–45. doi: 10.1016/j.jagp.2012.10.004.
    1. Gedde MH, Husebo BS, Erdal A, Puaschitz NG, Vislapuu M, Angeles RC, Berge LI. Access to and interest in assistive technology for home-dwelling people with dementia during the COVID-19 pandemic (PAN.DEM) Int Rev Psychiatry. 2021;33(4):1–8. doi: 10.1080/09540261.2020.1845620.
    1. Husebo BS, Allore H, Achterberg W, Angeles RC, Ballard C, Bruvik FK, Fæø SE, Gedde MH, Hillestad E, Jacobsen FF, Kirkevold Ø, Kjerstad E, Kjome RLS, Mannseth J, Naik M, Nouchi R, Puaschitz N, Samdal R, Tranvåg O, Tzoulis C, Vahia IV, Vislapuu M, Berge LI. LIVE@ home. Path-innovating the clinical pathway for home-dwelling people with dementia and their caregivers: study protocol for a mixed-method, stepped-wedge, randomized controlled trial. Trials. 2020;21(1):1–16. doi: 10.1186/s13063-020-04414-y.
    1. Mitchell AJ. The Mini-mental state examination (MMSE): update on its diagnostic accuracy and clinical utility for cognitive disorders. Cognitive Screening Instruments: Springer; 2017. pp. 37–48.
    1. Reisberg B. Functional assessment staging (FAST) Psychopharmacol Bull. 1988;24(4):653–659. doi: 10.1037/t08620-000.
    1. Wimo A, Gustavsson A, Jonsson L, Winblad B, Hsu MA, Gannon B. Application of resource utilization in dementia (RUD) instrument in a global setting. Alzheimers Dement. 2013;9(4):429–435. doi: 10.1016/j.jalz.2012.06.008.
    1. Wimo A, Jonsson L, Zbrozek A. The resource utilization in dementia (RUD) instrument is valid for assessing informal care time in community-living patients with dementia. J Nutr Health Aging. 2010;14(8):685–690. doi: 10.1007/s12603-010-0316-2.
    1. Wimo A, Gauthier S, Prince M. Global estimates of informal care. In: World Alzheimer report. London: Alzheimer's disease international (ADI) and Karolinska Institute; 2018.
    1. Arevalo-Rodriguez I, Smailagic N, Roqué i Figuls M, Ciapponi A, Sanchez-Perez E, Giannakou A, et al. Mini-mental state examination (MMSE) for the detection of Alzheimer's disease and other dementias in people with mild cognitive impairment (MCI). Cochrane Database Syst Rev. 2015;3. 10.1002/14651858.CD010783.pub2.
    1. Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist. 1969;9(3_Part_1):179–186. doi: 10.1093/geront/9.3_Part_1.179.
    1. Brody E, Lawton M. Physical self-maintenance scale (PSMS) 1988.
    1. Schneider LS, Olin JT, Doody RS, Clark CM, Morris JC, Reisberg B, et al. Validity and reliability of the Alzheimer's disease cooperative study-clinical global impression of change (ADCS-CGIC) Alzheimer Disease: Springer; 1997. pp. 425–429.
    1. Razali NM, Wah YB. Power comparisons of shapiro-wilk, kolmogorov-smirnov, lilliefors and Anderson-darling tests. J Stats Modeling Analytic. 2011;2(1):21–33.
    1. West E, Nair P, Barrado-Martin Y, Walters KR, Kupeli N, Sampson EL, Davies N. Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups. BMJ Open. 2021;11(5):e050066. doi: 10.1136/bmjopen-2021-050066.
    1. Werner P, Tur-Sinai A, AboJabel H. Examining dementia family Caregivers' forgone Care for General Practitioners and Medical Specialists during a COVID-19 lockdown. Int J Environ Res Public Health. 2021;18(7):3688. doi: 10.3390/ijerph18073688.
    1. 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. Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study. BMC Geriatr. 2020;20(1):1–8. doi: 10.1186/s12877-020-01719-0.
    1. Moholt J-M, Friborg O, Blix BH, NJD H. Factors affecting the use of home-based services and out-of-home respite care services: A survey of family caregivers for older persons with dementia in Northern Norway. Dementia (London) 2018;1471301218804981(5):1712–1731. doi: 10.1177/1471301218804981.
    1. Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, Ballard C, Banerjee S, Burns A, Cohen-Mansfield J, Cooper C, Fox N, Gitlin LN, Howard R, Kales HC, Larson EB, Ritchie K, Rockwood K, Sampson EL, Samus Q, Schneider LS, Selbæk G, Teri L, Mukadam N. Dementia prevention, intervention, and care. Lancet. 2017;390(10113):2673–2734. doi: 10.1016/S0140-6736(17)31363-6.
    1. Comission C. Koronakommisjonens rapport (NOU) Oslo: Myndighetens håndtering av koronapandemien; 2021.
    1. Cohen G, Russo MJ, Campos JA, Allegri RF. COVID-19 epidemic in Argentina: worsening of behavioral symptoms in elderly subjects with dementia living in the community. Front Psychiatry. 2020;11:866. doi: 10.3389/fpsyt.2020.00866.
    1. Cohen G, Russo MJ, Campos JA, Allegri RF. Living with dementia: increased level of caregiver stress in times of COVID-19. Int Psychogeriatr. 2020;32(11):1–5. doi: 10.1017/S1041610220001593.
    1. Dawson WD, Ashcroft EC, Lorenz-Dant K, Comas-Herrera A. Mitigating the impact of the COVID-19 outbreak: a review of international measures to support community-based care. 2020.
    1. Rodrigues R, Simmons C, Schmidt AE, Steiber N. Care in times of COVID-19: the impact of the pandemic on informal caregiving in Austria. Eur J Ageing. 2021:1–11. 10.31235/.
    1. Farré M, Haro JM, Kostov B, Alvira C, Risco E, Miguel S, Cabrera E, Zabalegui A. Direct and indirect costs and resource use in dementia care: a cross-sectional study in patients living at home. Int J Nurs Stud. 2016;55:39–49. doi: 10.1016/j.ijnurstu.2015.10.012.
    1. Wimo A, Reed CC, Dodel R, Belger M, Jones RW, Happich M, Argimon JM, Bruno G, Novick D, Vellas B, Haro JM. The GERAS study: a prospective observational study of costs and resource use in community dwellers with Alzheimer's disease in three European countries - study design and baseline findings. J Alzheimers Dis. 2013;36(2):385–399. doi: 10.3233/JAD-122392.
    1. Costa N, Wübker A, De Mauléon A, Zwakhalen SM, Challis D, Leino-Kilpi H, et al. Costs of care of agitation associated with dementia in 8 European countries: results from the RightTimePlaceCare study. J Am Med Direct Assoc. 2018;19(1):95. e1–95.e10. doi: 10.1016/j.jamda.2017.10.013.
    1. Teipel SJ, Thyrian JR, Hertel J, Eichler T, Wucherer D, Michalowsky B, Kilimann I, Hoffmann W. Neuropsychiatric symptoms in people screened positive for dementia in primary care. Int Psychogeriatr. 2015;27(1):39–48. doi: 10.1017/S1041610214001987.
    1. Gustavsson A, Jonsson L, Rapp T, Reynish E, Ousset P, Andrieu S, et al. Differences in resource use and costs of dementia care between European countries: baseline data from the ICTUS study. J Nutr Health Aging. 2010;14(8):648–654. doi: 10.1007/s12603-010-0311-7.
    1. Nichols E, Szoeke CE, Vollset SE, Abbasi N, Abd-Allah F, Abdela J, et al. Global, regional, and national burden of Alzheimer's disease and other dementias, 1990-2016: a systematic analysis for the global burden of disease study 2016. Lancet Neurol. 2019;18(1):88–106. doi: 10.1016/S1474-4422(18)30403-4.
    1. Wolford B. Data Protection Impact Assessment (DPIA). How to conduct a Data Protection Impact Assessment. 2020.

Source: PubMed

Sponsorer og samarbeidspartnere

Medisinsk tilstand

Legemiddelintervensjoner

3
Abonnere