‘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

Abstract

People with dementia can experience a shrinkage of their social worlds, leading to a loss of independence, control, and reduced wellbeing. We used “the shrinking world” theory to examine how the COVID 19 pandemic has impacted the lives of people with early-middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: The forgotten person with dementia; Confusion over government guidance; Deterioration of cognitive function; Loss of meaning and social isolation; Safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the “shrinking world” effect and created a tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation, and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practices that allow them to participate in society. We recommend ways in which the government, communities, and organisations might counteract some of the harms posed by this shrinking world.

The Experiences of People with Dementia and Informal Carers Related to the Closure of Social and Medical Services in Poland during the COVID-19 Pandemic—A Qualitative Study

“…Despite the preservation of personal resources such as the ability to adapt and cope with the new situation, people with dementia were deprived of the most important factors against the faster cognitive deterioration and decline in their overall well-being [ 1 , 6 , 10 , 12 ]. This situation corresponds to Talbot and Briggs’ “shrinking world” theory [ 45 ] relating to the experience after receiving a dementia diagnosis [ 56 ]. COVID-19 has escalated the dominant sensation following a dementia diagnosis that the world of a person is narrowing.…”

“…This study highlights the experiences of people with dementia and informal carers related to the pandemic’s public health restrictions and adds to a developing evidence base about the detrimental impacts of COVID-19 and associated restrictions on the lives of some of the most vulnerable members of society and their informal carers [ 36 , 45 , 46 , 47 , 48 ]. The results reveal various aspects of the pandemic’s consequences on people’s lives and changes in their care needs.…”

“…COVID-19 has escalated the dominant sensation following a dementia diagnosis that the world of a person is narrowing. It has deprived people with dementia of the social foothold and disrupted their regular activities, posing another loss [ 45 ]. On the other hand, however, being restricted to home may have offered relief from outside sources of anxiety and could prevent people from engaging with everyday activities [ 57 ].…”

“Nobody Seems to Know Where to Even Turn To”: Barriers in Accessing and Utilising Dementia Care Services in England and The Netherlands

“…This has not been found in the present study, as there was no need for remote care and people were only discussing their experiences of face-to-face services. An additional novel personal barrier which the pandemic seems to have created is a reluctance by people with dementia to re-emerge after lockdowns for fear of being able to engage in everyday tasks and meetings [27]. This is likely going to impact on their desire to access services, and with limited digital literacy, this may leave a large proportion of people with dementia without vital social support living in the community.…”

“…The COVID-19 pandemic has brought on new inequalities and difficulties in utilising dementia care, whilst exacerbating existing ones also [12,25,26]. Generally, the pandemic has had a tremendously negative impact on the lives of people living with dementia and informal carers, illustrated by difficulties in accessing social support services and the emotional impact of experiencing lockdown [27,28]. Carers have noticed their relatives with dementia to deteriorate faster, for example [29], which has also been supported by findings on the cognitive severity in people living with dementia [30].…”