Coronavirus (COVID-19) - dementia and COVID-19: action plan

Living Safely In A Care Home

"Families and family carers need to be recognised as partners in care when someone goes into a care home. We don't switch of our caring role and help to recognise this."

"there is no substitute for in person contact with your family and the friends that matter to you."

"In care homes I have seen the reduced activity levels within care homes and how this is impacting on mobility"

"Not all relatives are fully involved in keeping an eye on guidance. They tend to watch the First Minister standing up at the daily briefings saying one thing but when they go to the care home this isn't the case and it's very distressing"

"I don't see how I can be an equal partner if I can't even see him (in the care home) or touch him"

"Elderly people in care homes who don't have families – for them often the therapy visitors are their only visitor and that has completely stopped since the beginning of lockdown. That's an important part of care home life that is missing, for some people with no family visitors that their only contact with the outside world."

• Care homes should be homely, safe places for people with dementia to live when they are unable to continue to live independently or with care at home. People living in care homes are our most vulnerable to infection and we have introduced measures designed to keep people as safe as possible. The Clinical and Professional Advisory Group on Care Homes (CPAG) has been working intensively to support care homes on infection prevention and control, translating standards applied in acute settings to apply appropriately in a homely setting and creating 'wrap around' clinical care, standards and scrutiny designed to keep care homes COVID-19 free or to quickly recover from an outbreak. CPAG also recognised the impact of visiting restrictions on people living in care homes and their families and has prepared guidance designed to support families to stay connected.
• Through the Connecting Scotland programme care homes have been supported to use digital tools to keep families connected; 400 applications from care homes to receive complimentary ipads were received in the first week.
• Care home relatives have understandably been distressed at not seeing their loved ones in care homes and, despite guidance enabling indoor visiting, irrespective of the tier they live in, many families have not had access to their loved ones because the care home has not yet opened up indoor visiting. To help alleviate this distress, family carers were included in the 14 testing pilot sites, now being rolled out across Scotland.
• Respondents to this plan's engagement process acknowledged and commended care home staff for their dedication to supporting and protecting residents and told us that care home visiting guidance was a useful tool in principle but often caused confusion and distress because of its inconsistent implementation.
• People told us that window visits, still the only option offered by some providers, caused particular distress with families referring to the confusion it caused the person with dementia who couldn't understand why their family member was choosing not to come inside and spend time with them.
• We heard that not all families want the same thing though and some participants talked about wanting to reduce footfall in their loved one's care home and, whilst finding it a difficult decision, opted not to visit.
• The withdrawal of therapeutic support, delivered by Allied Health Professionals (AHPs), from care homes, during the pandemic was raised frequently as a concern. The physical deterioration that also impacted on mental wellbeing of a loved one in a care home caused anger and distress. The principles of the Connecting People, Connecting Support AHP report were critical, with Occupational Therapists, Physiotherapists and Speech and Language therapists cited frequently as vital to upholding physical and mental health and wellbeing for care home residents. This concern extended to the lack of movement for people living in care homes, particularly where, during a COVID-19 outbreak, residents spent long hours sitting alone in their room. Concerns about possible breaches of human rights were expressed by some participants.

Current action on care homes

• Coronavirus testing for designated visitors of care home residents started in December 2020 with 14 early adopter care homes across five local authority areas. From Monday 14 December 2020, lateral flow test kits are being sent out to all homes across Scotland. For any care homes unable to make use of lateral flow tests before Christmas, PCR (polymerase chain reaction) testing of visitors will be available when necessary to facilitate visiting over the festive period.
• The Scottish Government issued guidance on Friday 3 December 2020 for care homes over the festive period covering key issues such as visiting. The Scottish Government's visiting guidance published on 12 October 2020 supports increased personal interaction, including hugs or hand holding, as long as strict PPE and infection prevention control measures are met.
• The first vaccinations against coronavirus (COVID-19) have been given in Scotland to those who will be carrying out the vaccination programme. Following clinical advice from the Joint Committee on Vaccination and Immunisation (JCVI) we will begin with those groups which have been prioritised to address 99 per cent of preventable deaths associated with COVID-19. These include elderly care home residents and staff, frontline health and social care workers and a number of other groups who are at risk of serious harm and death from this virus.

Excess Deaths Study

• There is a need to understand the relationship between both the COVID-19 virus and the impact of restrictions on the progress of the dementia illness, health outcomes and excess deaths rates across all care settings, especially during April-June 2020 which showed a 25% increase in excess deaths attributed to dementia (Reference NRS report).
• Evidence is required in order to inform clinical and other professional responses to people with dementia who contract COVID-19 in the vaccination and recovery phase. Evidence is also required to understand the potential impact of long COVID-19 on people with dementia and how to improve responses. We need to have a greater understanding for practitioners, policy makers and care providers of the potential impact on the dementia population and produce recommendations for clinical practice and overall care responses across all care settings.
• Key relevant risk factors may be: care setting; co-morbidities; age; impact of and response to restrictions; treatment efficacy; service access and workforce capacity.
• Potential impact of risk factors may include: significantly reduced mobility; inconsistent review of use of psycho active medication; risk of suppressed immunity resulting from side effects of psycho active medication; impact on respiratory functions as a result of medication.

Commitment 14: Through the national Dementia in Care Homes working group we will continue to work with the care home sector to help ensure people with dementia have their rights and dignity upheld, and access to the rehabilitation they require in response to COVID-19.

Commitment 15: As part of work on Excess Deaths during the pandemic, we will commission and publish a piece of research to help inform and enhance clinical and other professional responses to people with dementia who contract COVID-19 in the vaccination and recovery phase.

Commitment 16: We will commission a study in partnership with the Care Inspectorate to examine the use and review of psychoactive medication in care homes during the pandemic.