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Dementia and COVID-19
Care facilities like other settings have to implement social distancing and social isolating measures to reduce the risk of infecting residents and carers with COVID-19 with the aim of reducing the number of deaths in care homes.
Implementing social distancing and isolating measures is challenging for staff and care home residents. It is particularly challenging when considering how to best implement these measures with residents living with dementia. Residents may become distressed at being required to isolate in their bedrooms and may move outwith their immediate bedroom areas, risking contamination and cross-infection to other residents and staff.
This section will provide information and guidance on how to support residents living with dementia to adhere to the new restrictions. It will also offer details of where to access further support. The content of this section was developed using a number of sources including resources from the NHS Lothian Edinburgh Support Services.
Here is a useful short animation on how to help continue to meet the needs of people living with dementia during COVID-19, as well as a poster (pdf) to download for display in your care home about how to help you support someone living with dementia during this time.
Studies have shown that PPE can create barriers to effective communication, particularly for people who live with dem...
Studies have shown that PPE can create barriers to effective communication, particularly for people who live with dementia and those with hearing problems. Given this, you might want to consider:
NHS Lothian have produced a useful document on the impact of PPE on people with dementia.
Hand washing is crucial in reducing the risk of contracting COVID-19 but it can be difficult to explain to a person w...
Hand washing is crucial in reducing the risk of contracting COVID-19 but it can be difficult to explain to a person with dementia why they should wash their hands more frequently.
Staff should adopt a person centered approach to support people to maintain good hand hygiene which should be clearly documents within their plan of care.
Many people with dementia can experience distress or struggle with hand washing. Some measures for encouraging and improving hand washing you may want to consider include:
Normally, you wouldn’t try to stop a person who has dementia ‘walking with purpose’. However, if the person has suspe...
Normally, you wouldn’t try to stop a person who has dementia ‘walking with purpose’. However, if the person has suspected or confirmed COVID-19, you may need to isolate the resident to their bedroom. You may not be able to eliminate the risk or stop the person ‘walking with purpose’ completely, but every effort needs to be made to minimise this risk.
Understanding why someone “walks with purpose” will help you to decide what interventions try, for example:
Those in need of physical activity: Play ‘football’ with large exercise ball in the corridor, when others are not around, or in their room if it is large enough; dance to music that they like or make more use of outdoor space if safe to do so.
Those in need of occupation: put together an “individualised rummage box” in their room and support them to access this if needed (prompts to access the rummage box may be needed); encourage them to sort out their drawers and wardrobe, even if this means messing things up first so that they need to sort, fold and put the things away.
Those in need of reassurance or company: use videoconferencing software on smartphones, tablets and portable computers as much as possible to maintain human contact for residents; consider Simulated Presence Therapy (SPT) if you think the sight or sound on audio or video of a loved one may provide comfort and reassurance. Or of the resident would prefer telephone contact as they might find seeing a loved one on a screen confusing, then support them to use the phone.
If space allows you may want to consider “zoning” communal spaces within your care home into “Covid” and “non-Covid” ...
If space allows you may want to consider “zoning” communal spaces within your care home into “Covid” and “non-Covid” areas. This allows you to provide space for those residents who need to walk, whilst reducing the possibility of residents who are negative for the virus, contracting it from those who are positive. Individuals who are shielding should not be placed in cohorts
In zoning, you colour codes areas in your care home as red, yellow and green zones, using visible signs:
You should identify potential areas that can be kept separate from the rest of the facility behind a locked door i.e. a locked unit or locking of fire doors to section off an area. This would provide a red zone area.
Where possible, empty rooms should be reconfigured into the red zone prior to any cases so residents can be transferred quickly as and when required.
If you are working in red zones you need to wear fluid resistant mask, gloves, and apron. Eye protection should also be worn during direct resident contact if there is a risk of coughing etc (see infection control guidance).
Staff working in yellow areas should wear fluid resistant mask at all times.
There should be limited changing of staff between red and yellow areas.
Non-essential footfall into red zones should cease and residents in red zones should be asked to remain in bedrooms if possible.
Residents can be moved back into yellow area on day 15 after first symptom if they have a temperature of 37.7 or less for 48 hours.
Residents may be concerned as to why things appear so different at the moment, why they aren’t able to go outside, wh...
Residents may be concerned as to why things appear so different at the moment, why they aren’t able to go outside, why family can’t visit, or why they have to keep their distance from other people in the care home. This section will help you to explain to residents the changes in the care home caused by Covid-19.
Help residents to feel safe and reassured - People with dementia can be very tuned into emotions and may pick up if you feel anxious or worried. If you feel anxious, which is understandable during this time you could try talking to colleagues as it is likely they will feel the same too or raise your worries with management. If your anxiety persists then you could contact the Health & Social Care Helpline on 0141 303 8968 (Monday-Friday 8am-6pm). If you feel relaxed, then residents are likely to feel more relaxed as this will communicate safety and reassurance.( editor note: Is this just for Glasgow – other HSCP helplines?)
Maximise communication strategies:
Every time you approach the resident, introduce yourself, say hello and tell them your name and what you role is, for example “Hello Sadie, I’m Mary, I’m the nurse. Is it OK if I help you with…”
Ensure the person has their glasses or their hearing aids on if they need them.
When talking to residents with dementia use short simple sentences and questions.
Allow the person additional time to understand what you are saying, and give them time to ask questions if they are able to.
If the person is having difficulties with communicating with you, try using non-verbal communication such as nodding your head and smiling to show you are listening. This can be very reassuring for the person having difficulties
Validate emotions e.g. “I can see you are upset right now, I would like to try and take your mind off things, shall we listen to your favourite music?”
Give positive instructions e.g. “shall we go here” rather than “don’t go there”.
There is an “easy read” information sheet produced by Edinburgh Behavioural Support Centre for residents who want to read information about COVID19 themselves and a sheet with visual prompts to help you explain things to residents who can’t read about it on their own.
Explaining the virus - Part of explaining the virus is to encourage residents to adhere to current hand washing guidelines (See: “Handwashing tips” section). Use words such as ‘contagious’ and ‘nasty flu’ to explain the virus. Explain that the most common symptoms are a dry cough or a high temperature called a fever. Say that the flu spreads when people are too close, so we need to stay apart to stop it spreading. Aphasia friendly resources can help you to explain.
Explaining why the residents have to stay in the care home - Explain the Government is taking this very seriously wants to protect people from becoming ill. Everyone has to stay indoors or in private gardens to keep them safe.
Explaining why family can’t visit - Explain that just now the care home has to be closed to visitors to keep them safe and to avoid them becoming ill, and that their family are having to stay home to keep themselves safe too. Explore alternative ways for residents to keep in touch with family and friends. ( See: “Maintaining contact with family and friends” section).
For people with dementia, like most of us, regular contact with family and friends is a key part of their lives and c...
For people with dementia, like most of us, regular contact with family and friends is a key part of their lives and contributes to wellbeing. Sudden changes in a person’s routines such as not seeing family can increase anxiety, and cause distress and confusion. Whilst is important that everybody follows the current guidelines to keep residents and staff as safe as possible, it is important to acknowledge and respect people’s needs for social contact and mental health, as well as their human rights.
You should advise residents and families of alternative ways to stay in touch. The opportunities will differ depending on the individual resources and circumstances in each care home. People’s care and support plans should explain how they will be enabled to stay connected.
Some things to consider when thinking about which communication to use:
If a resident is confined to the same room for a long time with limited activity, they are very likely to become bore...
If a resident is confined to the same room for a long time with limited activity, they are very likely to become bored and try to leave their room. Try to provide routine and predictability as far as possible to give a sense of safety and security. You may want to try:
People who are living with dementia are much more likely to develop delirium (a confused state) if they become inf...
People who are living with dementia are much more likely to develop delirium (a confused state) if they become infected with Covid-19. The British Geriatrics Society has recently produced guidance on “Managing delirium in suspected and confirmed cases of COVID-19”.
If possible you should try to reduce the risk of delirium by avoiding or reducing the causes. This includes regular orientation, avoiding constipation and urinary retention, treating pain, identifying and treating infection, promoting a good sleep/wake cycle, providing regular fluids and positioning individuals to support breathing. See SIGN delirium guidelines for more information.
Maintaining isolation and the use of PPE may worsen agitation and/or delirium. As a result you may need to use medication sooner than you normally would to reduce the risk of transmission of COVID-19.
If a resident tests positive for Covid-19, they should be quarantined and isolated as far as possible from other resi...
If a resident tests positive for Covid-19, they should be quarantined and isolated as far as possible from other residents. Supporting and encouraging someone to spend time in their room may pose an ethical and practical challenge for care services, particularly where the person lives with dementia and they may not understand the reasons for the request. The Mental Welfare Commission www.mwcscot.org.uk/ has produced comprehensive guidance for services to use, underpinned by a human rights approach.
All decisions to limit the free movement of a person must be reasonable, proportionate and justifiable. It is important to remember that any limitations put in place must be the least restrictive for the person and used for the shortest period necessary.
Try and communicate in a clear, simple way the reasons for quarantine e.g. to manage infection control procedures and try and encourage other residents not to enter that person’s bedroom. The isolation is likely to make the person feel lonely contributing towards a deterioration of their mood and may result in the person becoming more withdrawn.
Here are some strategies that may help reduce distress experienced by someone having to self-isolate in their room due to COVID-19.
Further information can be found by accessing the NES Unit 4 on proactive approaches to prevent distress and promote psychological wellbeing during COVID-19 pandemic
Reduce social isolation
Reducing the distress associated with self-isolation
Having to stay in a room can cause distress; this can be worse for a person with dementia who has difficulty understanding or remembering the reason why they need to stay there. The person may not recognise their surroundings, due to their dementia. However, it may also be due to delirium (See; “Delirium” section). If a person continues to come out of their bedroom then you will need another method of infection control. (See: “Walking with purpose” section). Things to consider to reduce the impact of self-isolation:
Dealing with reduced activity
Being in isolation means a resident can’t engage in their usual routine and this will mean they have significantly less involvement in social activities. Their usual routine and structure of daily life will have changed and this is likely to cause boredom leading to low mood and anxiety. Some further suggestions on activities can be found here in the “Supporting meaningful activity” section.
Helping people understand why they have to stay in their room
It is very difficult for a resident with dementia to understand and retain the reasons as to why they have to stay in their bedroom. This can increase a sense of fear, anger, sadness and anxiety which could result constantly seeking staff, increased repetition, crying or physical/verbal aggression. You could try considering the following strategies.
General strategies that might be helpful in reducing distress during isolation
The ‘Coronavirus (Scotland) Act 2020’ http://www.legislation.gov.uk/asp/2020/7/ contents emergency legislation came i...
The ‘Coronavirus (Scotland) Act 2020’ http://www.legislation.gov.uk/asp/2020/7/ contents emergency legislation came into force in April 2020. It is important for services to understand how this may influence care and support, particularly for individuals living with dementia.
Schedule 3, Part 2 of the Act describes interim changes to existing legislation related to vulnerable adults, with particular reference to the ‘Adults with Incapacity (Scotland) Act 2000’ http://www.legislation.gov.uk/asp/2000/4/contents
Most individuals with a diagnosis of dementia who live in care homes will have in place a ‘Section 47 certificate of incapacity’ https://www.gov.scot/publications/section-47-certificate/. The duration of these certificates should not exceed three years in normal circumstances. However, in the current situation, and aligned to the emergency legislation published, any certificate which becomes out-of-date is automatically extended for the duration of the legislation.
Some individuals who have a Section 47 certificate in place, may also have a legal proxy advocate (welfare guardian/power of attorney). A time limit to decision-making capabilities is sometimes applied for welfare guardians. However, under the emergency legislation, this time limit is removed for the duration of the legislation. When guardianship orders are renewed, again a time limit to these is normally applied (five years). Should the date of expiry for these occur during the emergency legislation, they are automatically extended for the duration of the legislation.
Information on the Human Rights implication of COVID-19 outbreak for people with dementia along with information to support health and social services staff in care homes provide an appropriate response has been produced by NES and can be accessed here, Unit 5 : protecting the human rights of people with dementia during COVID-19
Covid-19 related links: The Care Inspectorate “Dementia Care During the Corona virus (Covid-19) Pandemic” Adults w...
Covid-19 related links:
Dementia resource links:
National organisation links:
NES have also developed of 5 a set of short learning bytes which you may find useful. The units aims to help staff su...
NES have also developed of 5 a set of short learning bytes which you may find useful. The units aims to help staff supporting people in to develop their understanding about dementia to support people in care homes living with dementia and their families and carers to maintain the best quality of life possible during the COVID-19 pandemic.
Unit 1: understanding dementia- This unit is for staff who have changed roles, are unfamiliar with working with people with dementia or simply need a refresher in understanding dementia
Unit 2: supporting the physical health needs of people with dementia and their families during the COVID-19 pandemic- this unit considers the potential impact of COVID-19 on the health and wellbeing of people with dementia, describe appropriate responses to address physical healthcare needs and support the reduction of risk of transmission of COVID-19
Unit 3: using activities, connections and communication to prevent distress - considers how to prevent distress by using proactive approaches to communication, social networks and community connections.
Unit 4: proactive approaches to prevent distress and promote psychological wellbeing during COVID-19 pandemic - considers how to use proactive approaches to promote psychological wellbeing for people with dementia during the COVID-19 pandemic
Unit 5 : protecting the human rights of people with dementia during COVID-19 - aims to support health and social services staff working in care homes to recognise the potential Human Rights implications of the COVID-19 outbreak for people with dementia, their families