Researchers in the United Kingdom have conducted an extensive survey exploring the impact that lockdown had on people living with low prevalence and young-onset dementias during the first wave of the coronavirus disease 2019 (COVID-19) pandemic.
Low prevalence and young-onset dementias are those with clinical onset before the age of 65 years, with symptoms sometimes even presenting among people in their forties or fifties.
The researchers found that people living with these dementias during the first nationwide lockdown reported a reduction in the support they received, a worsening of dementia symptoms, and more difficulty connecting with people socially.
People caring for these individuals also reported difficulties in both providing care and receiving support, as well as a decline in their own mental health and well-being.
The team – from University College London and Bangor University – says that the COVID-19 pandemic clearly appears to have negatively affected the health and well-being of most people with dementia and the caregivers who participated in this survey.
A pre-print version of the paper is available on the server medRxiv*, while the article undergoes peer review.
Lockdown changed provision of dementia care
In the UK, a nationwide lockdown was imposed in response to the COVID-19 pandemic on March 23. The mitigation measures that followed, including a banning of non-essential contact outside of one’s household and a suspension of non-essential services, led to significant changes in the provision of care for people with dementia.
In care homes (where residents often have dementia) visiting restrictions prevented access to family caregivers, leaving many residents feeling isolated. The primary sources of support for those with dementia living in the community were also removed or significantly reduced.
The introduction of physical distancing and infection control measures not only prevented people with dementia accessing therapy and care, but also prevented caregivers accessing the support they need to provide care.
“The lockdown and the first wave of COVID-19, in general, has had a detrimental impact on people with dementia, both for those living in the community and care homes,” writes the team.
More about low prevalence and young-onset dementias
The clinical presentation of low prevalence and young-onset dementias differs from the canonical episodic memory decline that characterizes typical Alzheimer’s disease.
For example, one form of young-onset dementia called posterior cortical atrophy is characterized by deteriorating vision, while primary progressive aphasia is characterized by language difficulties that affect communication.
Another form of young-onset dementia called behavioral variant frontotemporal dementia is characterized by changes in social behavior, judgment, impulsivity and empathy.
People with these dementias and their families require specialized care and support and they may also experience particular challenges during the pandemic,” says Sebastian Crutch and colleagues.
What was the aim of the current study?
The researchers set out to document the impact of the first lockdown among members of Rare Dementia Support (RSD) – an organization in the UK that provides education and support to people with low prevalence and young-onset dementias.
The organization has 2,000 members, 1,850 of whom are people with dementia who live with caregivers, while the rest are healthcare professionals.
The team distributed an online survey to 1,850 members of RDS on August 11, and the survey remained open until September 30.
This is the most extensive survey documenting the impact of the first nationwide UK COVID-19 lockdown on people living with low prevalence and young-onset dementias,” writes the team.
The survey comprised eleven questions about the impact of the lockdown on the person with dementia’s cognitive symptoms, medication, well-being, ability to do things, and ability to connect with people. The survey also included questions about the impact on caregivers and their ability to provide care.
What were the findings?
The team obtained 208 completed surveys, 184 of which were from caregivers and 24 from people living with dementia.
Overall, 70% of carers reported that the person with dementia experienced a decline in cognitive symptoms, such as increased disorientation or more difficulty communicating. Meanwhile, 62% percent reported a decline in the person’s ability to do things, and 57% reported a decline in their well-being.
More than half (55%) of caregivers reported a reduction in the support they received in providing care and almost all (93%) carers of people living in care homes said it was more difficult to provide care.
The team also found that 26% percent of carers also reported changes (initiation or increase) in medications the person with dementia used, including antidepressants, benzodiazepines, antipsychotics, pain killers, blood thinners, and beta-blockers.
In terms of the carers themselves, 79% percent reported a decline in their own physical or mental health, which increased to 93% when specifically considering responses from family carers of people living in care homes.
Moreover, 74% percent of people with dementia reported more difficulty connecting with people socially and 50% said that the lockdown had negatively impacted the support they received and their well-being.
What do the authors conclude?
“The Covid-19 pandemic has negatively impacted the health and well-being of the majority of carers and people with low prevalence and young-onset dementia who participated in this survey,” writes Crutch and team.
“Social and cognitive stimulation and specialized therapeutic support are essential to enable people to live well with dementia, yet these fundamental pillars of the dementia care pathway were interrupted during COVID-19 first wave’s lockdown,” they conclude.
medRxiv publishes preliminary scientific reports that are not peer-reviewed and, therefore, should not be regarded as conclusive, guide clinical practice/health-related behavior, or treated as established information.