Q&A Coronavirus (COVID-19): Dementia and care homes

Questions and answers for social care

Updated: 15 June 2020

Your panel

Professor of Old Age Psychiatry, Alistair Burns Alistair Burns, Professor of Old Age Psychiatry, University of Manchester.
Consultant Admiral Nurse, Rachel Thompson Rachel Thompson, Consultant Admiral Nurse, Lewy Body Dementia.

I find that wearing a mask and an apron can be quite off putting for many of my residents. What can I do to put them more at ease?

  • It’s important to help someone recognise who you are, explain why you are wearing the protective equipment and put them at ease.
  • Try writing your name and role on your apron and having a picture of yourself pinned to your uniform (but make sure you don’t damage the gown).
  • If you are feeling anxious the person may pick up on this, so take some deep breaths before going in to see them. Try to be calm, positive and reassuring.
  • When entering someone’s room, knock on the door and don’t rush in, greeting them using their name and introduce yourself with a smile, stating your name and your role (don’t assume they know who you are).
  • See how they respond and allow them to get a good look at you before approaching.
  • Acknowledge the mask or specific personal protective equipment (PPE) equipment you are wearing saying 'Sorry I look a bit funny today, I’m wearing this to protect us both from any bugs or germs we might have.'
  • Consider using laminated signs with basic information, e.g. ‘I’m here to help'. Ensure these are appropriately sterilised as per infection control guidance.
  • You may need to use short sentences and repeat things clearly to help someone understand.
  • Try letting your voice drop down – a lower voice can be more resonant and soothing to others
  • Connect with the person’s life story; talk about their family or pictures in their room/house.
  • Hum a tune together or get some relaxing music on in the room.

I have heard a phrase that carers should learn to 'smile with your eyes'. What does this mean?

  • ‘Smiling with your eyes’ is about communicating warmth and positive regard even when wearing PPE.
  • Non-verbal communication is really important when someone has cognitive impairment, but wearing PPE can make this difficult.
  • However, when we smile the whole of our face changes including our ‘eyes’. Try looking at yourself in a mirror and smile; you will see your eyes change shape and can visibly ‘light up’.
  • Smiling should be matched with a calm tone of voice; both pitch and speed plus the use of gentle touch (when wearing gloves).
  • Ensure the person has what they need to communicate well (e.g. hearing aid, glasses), make eye contact and (whenever possible) let them see your face. You may need to come down to their eye level in order for them to properly see your eyes.
  • When we feel anxious we communicate this through our body language and people living with quite advanced dementia may pick up on our own anxieties about COVID-19.
  • Try to be aware of your non-verbal communication and, when appropriate, show your sense of humour, smile, laugh and communicate reassurance to help people feel at ease.

We have been told to do swabs on our residents with dementia, but surely this would be upsetting for them – what is the best approach?

  • It is essential that we offer people with dementia a test for COVID-19 in order to both protect them and other residents/staff/family who they may come into contact with.
  • However, if someone with dementia is unable to understand what the swab is for, it may be distressing for them as the process can be quite uncomfortable.
  • If the test is reliable, adopt the least invasive approach as possible (i.e. nose swabs) in order to minimise distress and discomfort.
  • An assessment of capacity, understanding the person’s wishes and involving families should be followed in making a decision about testing and the best approach.
  • If someone is unable to consent, a ‘best interests decision’ may include consideration of the impact on other residents and what the person would have wanted.
  • See the Government advice, including a short video on how to carry out nasal and throat swabs for residents in care homes.
  • Ensure good communication is maintained throughout, i.e. explain what you are doing using short simple sentences, provide reassurance, try to remain calm, smile, hold their hand and remain positive when talking and offering support.
  • If the person becomes distressed then stop and try again later; perhaps someone who they respond to well could try or you could use music that the person likes in the background to help them relax.

Many of our residents lack capacity. Is it still alright to use something like Skype, Whatsapp or Zoom to allow them to talk to their relatives?

  • This can be an important way of providing reassurance, comfort and a sense of belonging for the person as well as offering families who may be very distressed and worried, a vital opportunity to see their relative.
  • When people lack capacity, it is important to consider ‘best interests’ based on information from those who know them best, the person’s preference, previous experience and level of impairment.
  • Consent for photos and filming is usually gained from residents from family on admission to a care home; you may want to add extra documentation for the use of video technology.
  • Try out the video communication; explain the process carefully and assess the response. It may initially be confusing and disorientating and if it causes genuine distress then you can stop the call. However, be aware that emotional responses may be perfectly normal, as seeing loved ones on screen may remind them they are missing someone.
  • Provide preparation for the resident as well as family members, e.g. sound checks, mute, video, etc. You may need to advise family about talking slowly, having only person at a time and keeping the calls short. Dementia UK have useful tips for families.
  • Be clear about the purpose of the call, i.e. this is a family/social call and advise that questions about care should be asked separately.
  • Continually assess whether this approach benefits the resident and consider what support and help they need to use it, both during and after, in case there is any distress.

How can we support families and staff following the death of a resident?

  • The death of residents in care homes has been particularly difficult during COVID-19 for both families and staff.
  • The sudden increase of unexpected deaths, stress of exposure to COVID-19, restrictions on social interaction/travel and being apart from family members have all interrupted the normal grieving process for many. This has left some families and staff feeling shocked and in need of support with feelings of guilt, loss and post-traumatic stress.
  • Although we all experience grief and loss in different ways, bereavement support and preparing people for end of life can be crucial in helping people come to terms with the death of someone.
  • In dementia care, recognising the end of life can be difficult and the ability to communicate and share important memories may be harder. However, providing support for families when the person with dementia is nearing the end of life may help families to cope, including:
    • acknowledging the situation and associated feelings
    • ensuring clear, open communication and enabling family involvement wherever possible
    • encouraging reminiscence and celebrating memories
    • providing reassurance about how supportive they have been
    • encouraging plans for when the person dies so it doesn’t seem overwhelming when it happens.
  • If family members are unable to visit, virtual technology may help people stay connected and supported. However, there have been some reports that some people with dementia find this distressing, as they can see their relatives but cannot touch them.
  • Following death, encourage families to keep connected with those around them and plan for any support they may need. This may include the most basic things, such as eating well and staying hydrated, getting support with shopping, keeping to a routine even if they don’t feel like it and talking to close family/friends about their feelings.
  • Remember that grief takes time, and changes from day to day, hour to hour, so encourage acceptance of feelings but also advise seeking support from a GP if sleep or low mood is becoming more difficult.
  • Acknowledging the loss for staff is also important and opportunities for reflection and supervision should be provided.

Support from SCIE

SCIE's COVID-19 hub for care homes contains more relevant information including safeguarding, Advice for supporting autistic adults and adults with learning disabilities and infection control.