Coronavirus restrictions: Why social contact is so important for people with dementia

People living with dementia have been hardest hit by the coronavirus pandemic.

Evidence has shown that dementia is the most common pre-existing condition found among deaths involving COVID-19. There has been a huge surge in the number of deaths of people with dementia who do not have the virus. 

Shielding and isolation initiatives were introduced to save lives, but there is a real worry that for people living with dementia, in care homes and in their community, such initiatives have contributed to an increase in deterioration with potentially devastating impacts. 

Lockdown easements and planning appear to be underway. However, the Government is yet to give guidance on what happens next for people affected by dementia who rely on social care.

Given the devastating impact lockdown and coronavirus is having on people  affected by dementia, plans to support them must be prioritised.

The role of social contact for people living with dementia

We have heard from hundreds of people worried about the impact of lockdown measures on their loved ones living with dementia.

People have been calling our Dementia Connect support line telling us how quickly their loved ones are ‘going downhill’, giving examples such as losing key skills like their ability to talk or feed themselves.

People living with dementia have also expressed their fears over losing basic cognitive and communication skills due to lockdown measures.

79 per cent of care homes have reported that the lack of social contact is causing a deterioration in the health and wellbeing of their residents with dementia.

The need for and benefits of social contact for people living with dementia have not changed since the outbreak of COVID-19, yet the current restrictions have made social contact with loved ones almost impossible.

Keeping in touch via technology, which is often suggested as a replacement for visits from loved ones, is not accessible or user-friendly for many people, particularly those living with dementia. Long-term, it is not a substitute for visiting and being able to care for loved ones.

Care homes and social contact for people with dementia

While most of the care needs for someone living with dementia in a care home are met by staff, the role of family and friends often extends beyond visiting.

Depending on individual circumstances, or type and severity of dementia, the role of loved ones can range from social stimulation, to carrying out regular personal caring tasks and activities in addition to the care provided by staff.

This is integral to the wellbeing of individuals with dementia. A sudden or abrupt stop to family visits could lead to isolation, confusion, disorientation and deterioration of their condition, as well as placing extra pressures on care home staff.

Home care and social contact for people with dementia

Two thirds of people who receive home care live with some form of dementia.

Many people living with the condition want to continue living at home and be cared for a home for as long as possible to maintain their independence.

Remaining in this familiar setting, along with close contact with family members, has been shown to slow the progression of dementia.

Informal carers can provide vital social contact and support to the person living with dementia, although informal carers themselves also need social contact for their own wellbeing, as well as support from formal home care services to enable them to continue caring.

What Alzheimer's Society is calling for

With concerning evidence growing for people affected by dementia and the significant impact of a lack of social contact, people living with the condition and their loved ones need to know what happens next. 

Our new policy position lays out what we need to see for people affected by dementia in care home and the community.

Our key calls for care homes:

• PPE, testing and staffing supply issues must be addressed so that family/loved ones can visit and provide care if they want or are able to
• Family carers of people should be considered first for antibodies testing when it becomes available to ensure that there is minimised risk in enabling them to continue caring 
• Government must issue renewed guidance setting out how care homes can work with family carers to support people with dementia as lockdown measures ease
• Care homes should actively be assessing residents who receive family carer input and work with the carer(s) to discuss what's needed and how they can support the person living with dementia
• Visits should be enabled for people assisting in the provision of care under circumstances where the care/support is deemed essential to the person with dementia's wellbeing or ongoing daily care

Our key calls for home and community care:

• Supplies of personal protective equipment - Government to ensure that home care providers are able to access sufficient PPE.
• Short notice prioritisation for home care - If any of the 700,000 people who act as primary carers are taken ill with COVID-19 and are unable to care for their loved one with dementia at short notice for a period of at least two weeks, they should be prioritised for home care.
• Regular testing - Home care workers should be tested for COVID-19 on a weekly basis, with those receiving care being tested at least monthly.
• Better testing processes - All new recipients of home care should be tested for COVID-19

How you can help

We cannot allow dementia to fall off the radar in these challenging times. 

Every day the Government hold a daily coronavirus press conference. They give members of the public the opportunity to submit questions for the Government to answer during the live broadcast.

The more people who send this question to Government, the more chance we have of the question being asked. 

'Having little to no social contact with loved ones is resulting in serious decline for many people living with dementia. There has also been a sharp rise in dementia deaths. How is the Government considering the needs of people living with dementia in care homes and the community in plans to lift lockdown?'