Publication - Advice and guidance

Coronavirus (COVID-19): living with dementia in care homes

Published: 22 Jul 2021

Guidance on supporting people to remain safe during periods of isolation.

Published:
22 Jul 2021
Coronavirus (COVID-19): living with dementia in care homes

Overview

Due to the current coronavirus pandemic, care homes have been required to implement new infection prevention and control (IPC) measures along with social distancing and isolation measures to reduce the risk of the spread of the virus. 

Isolation measures are applied in care homes to residents:

  • during an outbreak of COVID-19
  • when a resident has COVID-19 symptoms or following a COVID-19 positive test
  • following a person moving into the care home from hospital
  • following a person moving into the care home from the community/ their own home,  in Protection Level 3-4
  • following a person moving into the care home from the community/ their own home, where identified as a requirement following individual risk assessment carried out by the care home in Protection Level 0-2
  • following a hospital stay
  • following identification as a close contact, after an outing away from the home as recommended by local health protection teams

Details on when residents should isolate, the length of which and when isolation can be discontinued can be found in Public Health Scotland Guidance COVID-19: Information and Guidance for Care Home Settings (Adults and Older People)’

These measures, although necessary for now, result in the restriction of movement of these residents within the care home and this will be a change to their daily care routines and practices. This is likely to be unsettling for many residents but may be particularly stressful for people living with dementia who ‘walk with purpose’.

Walking with purpose is likely to be an expression of unmet need and the person’s efforts to communicate, meet or respond to that need.  It is important that we continually consider what these needs are, and where possible engage with friends or family members to explore what individualised response may help. People living with dementia in care homes who walk with purpose may struggle to follow infection prevention and control (IPC) precautions and isolation recommendations. They may be distressed by the requirements to isolate, and the change to their routine, and are likely to need specific individualised support to help manage this change. There may also be an increased risk of falls or accidents for residents whose movement is restricted. 

We developed this guidance with partners within the social care sector to support care home staff to support residents who are identified as being required to isolate in their rooms for a period of up to 14 days as per Public Health Scotland guidance.

While care for these residents will vary according to the individual, the following summary points should serve as guidance:

  • sedation or restraint should not be used, in any circumstances, to enforce compliance with isolation or infection prevention and control measures
  • care homes should consider the specific additional support, meaningful activities,  and/or one-to-one care which may be necessary to support the persons needs
  • Occupational Therapists and Community Mental Health Teams may be able to provide useful advice about using meaningful activity to help support residents who walk with purpose within infection control zones
  • if individuals are unable to cope with isolation, additional PCR testing may be considered between day 5 and day 7 of isolation. However it is important to note that people living with dementia or with cognitive decline may not cope with a test (and with the subsequent isolation) which is invasive, and this could lead to distress. A person centred plan would be required to evidence the need for a test and no test should be done if this causes distress.
  • a negative test does not remove the need for continued vigilance for symptoms of COVID-19 infection.  Staff should be alert to changes in the resident that could indicate infection including the more atypical signs of infection (link to the Jenni Burton graphic please).  A resident may test negative but be symptomatic a few days later and staff should discuss with local Health Protection Teams any doubts or concerns and any additional IPC/ cleaning measures that may be required should the person be unable to cope with isolation.

Walking with purpose

People who are living with dementia may find it difficult to understand why they are required to remain in their room all day and night. Where a person is not able to understand the need for isolation measures it is more likely that they will attempt to come out of their room and will want to move freely around their environment.

Common reasons for walking with purpose are:

  • looking for someone or something
  • attempting to relieve pain or discomfort
  • feeling lost and trying to find the way
  • fulfilling a previous occupational role or family commitment
  • getting hungry, thirsty or needing to go to the toilet
  • feeling lonely or stressed
  • feeling bored
  • walking is part of everyday routine
  • they enjoy being physically active

Supporting someone safely

During these situations it is important for the staff team to support the person in a way that is person centred and respects their human rights. Equally it is important to ensure the safety of the person, other residents, and staff team.

Where the resident is known to the staff team then it is likely that they will have information about them, such as ‘getting to know me’ or their life story, along with a completed risk assessment and a person-centred plan. Where the person has recently moved into the care home, they will have had an assessment completed prior to moving, and some insight into their life story may well have been supplied from themselves or their family and friends. All this information is important to help with providing safe and effective person-centred care and support.

In order to support the person to remain safe and ensure the safety of all others, it is important the support team have current information about the individual and their habits,  that can help to inform their response. Dementia Ambassadors working in care homes and social service Dementia Champions are a particularly good resource for knowledge and understanding about supporting people living with dementia. It is also important that staff engage with family members where they can to build a complete picture about the things that matter to the individual including their interests and preferences.

Risk analysis

Person centred risk assessment and enablement is a key part to person centred planning. It is important that the risk assessment undertaken is thorough and detailed to ensure the person can be supported to remain safe and protect others.

While there is a risk of cross infection, should the person move around the care home without completing their 14 day isolation, there is also a risk that the person may become stressed or distressed, or be at risk of accidents/falls if they are prevented from leaving their room and moving around freely.

Therefore, risk assessments must consider the prevention of stress and distress in addition to IPC requirements, and  should identify the risks to the person that limitations to walking with purpose may have.

The care environment

It is not possible to eliminate every risk but managing the care environment can help to reduce safety issues associated with walking behaviours by adapting the care environment and considering staffing levels that may be required to safely support the adaptions. Adaptions to consider include:

  • the use of Zoning to minimise the risk of cross-infection and to provide safe walking spaces e.g. is there an area of the facility that could be safely sectioned off to give the person/people in isolation space to walk without the increased risk of cross- infection to others?
  • closing doors within the vicinity when possible, to minimise the risk of the person entering other resident’s bedroom areas
  • improving ventilation in any communal areas or corridors where the person may walk
  • removing unnecessary clutter, furniture and objects from walkways to minimise the risk of cross-infection
  • providing visual and verbal handwashing aids and prompts
  • providing structured time in outdoor garden areas whilst adhering to social distancing/isolation requirements

Orientating

Where the person is new to the care home the need for the them to explore and familiarise themselves with their environment may be heightened. Taking time to show the person around the home to assist them to get their bearings is also a helpful way to get to know the resident and for them to become more familiar with staff. This can help to alleviate stress and distress. To support this in a safe way the care home should :

  • organise and plan a walk round the care home on the day the person moves in and as often as the person needs until they are familiar with the environment and staff
  • ensure social distancing, while introducing the person to residents and care home staff where possible
  • encourage and support  hand washing or use of hand gel by the resident at appropriate times in line with IPC measures
  • thereafter, assist the person on a daily walk, around the home and/or outside in the garden (this can be more frequently if required)

Develop a plan of activities to support the person in their room

Developing a plan of activities that are in keeping with the persons known social interests, likes and dislikes and which can be undertaken in isolation of others, or using safe social distancing (as applicable) can help to alleviate feelings of boredom.

These may include:

  • gardening activities such as watering flowers or plants - especially where they have access to their own garden or patio area
  • musical activities such as listening to a favourite radio station or Playlist for Life, participation in a music quiz
  • watching a favourite television programme or film
  • provision of a personalised rummage box
  • seated chair exercises, with the aid of verbal and visual prompts
  • drawing or painting activities
  • reminiscence activities
  • sensory stimulation activities
  • meaningful occupation
  • routine daily tasks

Maintaining connections

Where the person is clearly distressed about the restrictions that isolation brings, it is important to support family, friends and other connections. In these cases, designating essential visitor status to the person’s close family member, to enable visiting and support, may provide comfort and support to the person. For further information on visiting including essential visits please see Open with Care - supporting meaningful contact in care homes: guidance

Other ways of connecting with wider family and friends should be encouraged through the use of telephone, Facetime, WhatsApp.

After the person has completed their isolation period visiting and outings should be fully supported in line with Open with Care guidance.

Additional resources

Care Inspectorate, Policy and Legislation- Dementia

Alzheimer Scotland- Information during coronavirus- helpline and information resources for people with dementia, their carers and families throughout the coronavirus pandemic

References

Supporting people with dementia who need space to walk. Nicola Wood NHS Forth Valley (based on the work of Susan Holland).