Covid-19 and the quality of life of people with dementia and their carers—The TFD-C19 study

Abstract

Introduction COVID-19 has placed unprecedented pressure on dementia health and social care systems worldwide. This has resulted in reduced services and support for people with dementia and their family carers. There are gaps in the evidence on the impact of the pandemic on Quality of Life (QoL). We carried out a study on the impact of the pandemic on the QoL of a group of people with dementia and their family carers who were part of a larger existing cohort study. Methods We quantitatively measured QoL, on two occasions during the two national lockdowns in 2020 and compared these data with those obtained when they entered the study (before the pandemic). Measures used included: DEMQOL-Proxy, Clinical Dementia Rating Scale and C-DEMQOL. To understand how QoL changed over time, a repeated measures ANOVA was run for each dependent variable with the following variables entered as co-variates: duration in study, baseline dementia severity, gender of the family carer, gender of the person with dementia, family carer relationship, dementia type, living status, age of the person with dementia, and age of the family carer. Results 248 participants took part in the study. QoL scores did not significantly decline between either time period for the person with dementia or their family carer. There was variation in subgroups; with co-resident status, carer relationship, gender of the person with dementia, age of the person with dementia, and baseline cognitive status influencing QoL outcomes in family carers. Discussion It is striking that people with dementia and their carers did not report a decline in QoL during the pandemic or in the months following restrictions suggesting the possibility of resilience. Variation in subgroups suggests that specific groups of family carers were more vulnerable to lower QoL; indicating the need for more tailored, nuanced support during this period.

Using digital technologies to facilitate social inclusion during the COVID‐19 pandemic: Experiences of co‐resident and non‐co‐resident family carers of people with dementia from DETERMIND‐C19

“…However, it may be that carers, as part of their coping styles to manage the unknown, are reluctant to look too far ahead 46 and so may not engage with these materials until dementia symptoms have progressed and the challenges of caring for the person become more profound. Research suggests that for the successful adoption of ICT and AT, there is a need for discussions early on in the care pathway between people with dementia, their carers and health and social care workers, around introducing digital technology in a supportive, safe and ethical manner 23,45 . Moving forward, further training to support dementia practitioners to facilitate these discussions in the early months following a diagnosis, rather than at crisis point, may help to raise awareness of the digital technology available, give carers the opportunity and time to learn how to engage with them as well as outline those that will be acceptable to the person with dementia.…”

“…In late 2019, a new coronavirus (COVID‐19) emerged causing global disruption and stringent restrictions on social contact, activities and service provision, resulting in adverse impacts particularly on the well‐being, burden and support capabilities of family carers of people with dementia 23–26 . It also triggered rapid and unprecedented changes in the use of digital technologies throughout society 27 as these became essential for many people to sustain social connection 28 .…”

Feasibility indicators of telemedicine for patients with dementia in a public hospital in Northeast Brazil during the COVID-19 pandemic

“…In addition, discontinuation of face-to-face activities including rehabilitation sessions, medical appointments and programs at daycare centers has aggravated cognition and functioning of this population. Reduced support available to caregivers has increased their burden [ 3 ]. Europe’s Alzheimer’s Society stresses that it is helpful for patients with dementia to build a good support network, keep well informed, ensure food and medical supplies, remain physically and mentally active, and stay socially connected [ 32 ].…”

“…The workup, diagnosis, and clinical follow-up of elderly with neurodegenerative diseases such as dementia may have been harmed by a shift in resources and professionals to combat the pandemic. Besides those living alone in community felt lonely due to social isolation and the absence of group activities [ 3 ]. Behavioral and psychological symptoms of dementia can be triggered or exacerbated by several risk factors (social isolation; pharmacology adherence disruption; carers’ load; reduction of nonpharmacologic techniques; absence of medical assessment; change in house routine) [ 4 , 5 ].…”

Navigating the COVID‐19 pandemic together: Discussions between persons with early‐stage dementia and their adult children

“…Despite assertions that older adults, particularly those with cognitive impairment, are most vulnerable to the negative consequences of the pandemic, some evidence indicates that these individuals have been relatively unburdened or unaffected by the pandemic. 4,5 Viewing older adults with dementia as wholly burdened by the pandemic discounts their social citizenship 6 ; in other words, this frame detracts from acknowledging persons with dementia as equal citizens with rights, responsibilities, life purposes, and equal stakes in all aspects of private and public life. It also minimizes their ability or unique aptitude to seek, make, and convey meaning to maintain their quality of life despite dementia-related challenges.…”