GP DEMENTIA COVID-19 GUIDANCE V3.0. 04 JUNE 2020 table version

This is a quick guide to coping with the complex problems that people living with dementia and their families are facing during COVID-19. It was developed by Dr Helen Martin (GP and Dementia United’s Clinical Lead) in conjunction with Dementia United.  The focus is on dealing with challenging behaviour and supporting people at home, planning ahead and acute management including recognising atypical presentations and managing delirium.

Are people with dementia at increased risk of COVID-19?
  • There is no increased risk per se but many people with dementia will be over 70 and have 2 or more co-morbidities or swallowing difficulties making them more vulnerable.
  • For those living in their own home shielding is only required if extremely vulnerable for another reason.
  • It may be more difficult for people with dementia to understand and comply with social distancing and increased hygiene measures, putting them at increased risk and potentially increased conflict with carers.
Atypical presentation of COVID-19 in People Living with Dementia


A-typical Presentation of COVID-19 in People Living with Dementia by Rebecca Dunning and Emma Wolverson, Humber Teaching NHS Foundation Trust

  • People with dementia may be less able to report their symptoms and clinicians should look carefully for signs of illness
  • Older adults may present with mild symptoms that are disproportionate to the severity of their illness and may not include cough or fever. Threshold for fever should be lower (37.5 or 1.5 > usual).
  • Common presentations include delirium (hypo and hyperactive), diarrhoea, lethargy, falls, reduced appetite and hypoxia without breathlessness.
  • Have a low threshold for considering the diagnosis and consider home testing – Arrange a test
Prevention and Management of delirium

Delirium is a common presentation in older people with COVID-19 but we should also consider other causes.


Anticipate and prevent delirium

  • Orientation, check glasses & hearing aids, avoid constipation & retention, does person have pain/hunger/toothache? Anti-cholinergic medications?
  • Treat by finding the cause (above list +infection/hypoxia). Maintaining calm environment and encouraging hydration SIGN GUIDELINE
  • The balance of risk to others or self may be different in isolation environments and mean an earlier move to pharmacological management than would normally be considered. See BGS guidance
  • The draft Greater Manchester community delirium toolkit can help. Complete the Expression of Interest form Delirium – EOI to Test out Toolkit v0.6 to test it out.
Escalation of care: making robust decisions

These decisions need to be considered, personalised, documented and communicated and be based on robust ethical principles

  • These decisions need to be considered, personalised, documented and communicated BMA Covid-19 ethical issues – a guidance note
  • MCA GP toolkit
  • Is there a care plan already in place? Is there a Lasting Power of Attorney or an Advanced Decision to Refuse Treatment? (These are legally binding)
  • Does the person have capacity to participate?
  • Remember that acting in best interests is not the same as making a best interest decision under the Mental Capacity Act: We are always required to act in the best interests of patients but Best interest decisions under the MCA (2005) must attempt to make the same decision that a patient would in these circumstances and follow the MCA code of practice
    1. Assessment to confirm the person’s lack of capacity to make the decision
    2. Take all practicable steps to support the person to make their own decision
    3. Consult with all relevant persons to inform your best interest decision
  • Document clearly how you came to the decision: consider the acute and chronic clinical situation including frailty and how likely they are to recover to a quality of life they find acceptable.
  • Communicate clearly with carers
  • Balance likely outcomes against burdens
Why is frailty important?

Frailty refers to a person’s mental and physical resilience, or their ability to bounce back and recover from events like illness & injury and significantly affects survival

  • NICE have recommended the use of the Rockwood frailty scale to support care planning decisions.
  • This is based on functional ability 2 weeks prior to illness and is not appropriate in assessing people under 65 or those with learning difficulty
  • It should only be used as part of a holistic assessment.
  • Electronic frailty index (efi) is a population tool and cannot be used on its own to measure frailty of individuals; further clinical assessment should supplement it.
Communication and planning ahead

Empowering people to be able to communicate their preferences and wishes when communication may be difficult. This is especially important when people are separated from carers and families and collateral history may be hard to establish

  • This is me’ document. This document helps health and social care professionals better understand who the person really is, which can help them deliver care that is tailored to the person’s needs. It can therefore help to reduce distress for people with dementia and their carers. It can also help to overcome problems with communication, and prevent more serious conditions such as malnutrition and dehydration
  • Advance Care Plan (ACP) documents allow preferences about future care to be recorded and help inform clinicians when a person cannot communicate their wishes
  • ACP guidance and template in the context of COVID-19
Ensuring good care for unwell people not in hospital and those who are dying Visiting clinicians with masks can be very frightening; consider a laminated sign with your name and a welcoming image of a doctor/smiley face

  • Consider providing home O2 monitors, use video consulting
  • Carers of people with COVID-19 at home will need support: consider what emotional/social care/nursing and medical support is available locally.
  • This Hospice UK guide focuses on help for carers when a relative is dying
  • NICE COVID-19 rapid guideline: managing symptoms (including at the end of life) in the community
  • Contact your local community palliative care team for help
Supporting care homes
  • Primary care has a crucial role to play in supporting care homes and the RCGP have written a new guide Top tips for GPs for care homes
  • PCN DES: The second wave of the NHS response to COVID-19 includes a commitment for weekly check-ins at all care homes and personalised care plans with the full DES to be applied from October
  • Locally commissioned care home services vary but many already provide this level of service or have been up scaled e.g. to extend their service to residential care.
  • Dementia United collated resources for care home staff
Supporting people with dementia, their carers and families

Social isolation may have a disproportionate impact on people with dementia and their carers. Ensure you know who provides support and if any gaps have opened up because of COVID-19? What additional burdens may have fallen on carers and what can you do to help?

  • Is there a back-up plan if carer becomes unwell?
  • How can a carer get help if it’s needed?
Supporting people with dementia, their carers and families
  • Dementia United website is full of useful resources
  •  National guidance for those who provide unpaid care to friends or family
  •  National guidance for the public on the mental health and wellbeing aspects of COVID-19
  •  TIDE Private Facebook group for carers of people with dementia
  •  Alzheimer’s Society provide COVID-19 advice for people affected by dementia and offer support via their Dementia Connect support line on 0333 150 3456 
  • Dementia UK have specialist Admiral Nurses on their Helpline, that family carers can contact. Tel: 0800 888 6678 seven days a week, 9am–9 pm Monday to Friday, and 9am–5pm on weekends. Or via email
Wandering or other behaviours that challenge may be extra difficult during lockdown

Behavioural and Psychological Symptoms of Dementia (BPSD) are manifestations of unmet need and our first step should be to understand the need

Consider COVID-19 for acute changes in behaviour.

Pain and depression may be harder to spot if communication is impaired.

Consider loneliness, frustration or hunger as causes


Support carers

  • Dementia UK website contains useful guidance for families to understand behaviour changes
  • The Alzheimer’s Society website has very practical advice on challenges such as ‘How can I stop someone with dementia leaving our house?”

Clinical guidance

  • For telephone advice you can contact your local CMHT directly. This might be especially useful when considering  pharmacological interventions that also carry significant risk (eg anti-psychotics or benzos)
  • NICE guidance includes a patient decision aid for use of these medications
  • Try to reduce the anti-cholinergic burden, useful list in NHS England dementia primer

Sedation or Restraint

The Mental Capacity Act states that restraint can be used when it is believed to be in best interests, is the least restrictive option and is used for the minimum amount of time. It is important to assess and manage risk and by doing so, reduce the use of restraint.

Social Care Institute for Excellence – Managing Risk, Minimising Restraint

See BGS guidance on using sedative medication during COVID-19