ADI has shared some guidance on the difficult decisions people with dementia, their families and carers are having to make about hospital admission and triage during COVID-19.
Families caring for someone living with dementia can feel cut-off, overwhelmed and anxious as current thought suggests that older populations and those living with complex health conditions are at greater risk. People with dementia are also more likely to be negatively impacted by social isolation, anxiety and confusion from worrisome news in the media and be at greater risk of behavioural changes, confusion and delirium during this period – putting them at risk of being hospitalized and hence further exposed to COVID-19.
Is COVID-19 different for people with dementia? Some key points:
There is currently no data providing evidence that people with dementia have more severe COVID-19 symptoms than others of similar age and health.
Many older people with dementia who catch COVID-19 will feel unwell for some days and will recover gradually at home.
People over 80 who have other illnesses and need admission to hospital with COVID-19 are least likely to benefit from going into the hospital since their admission has associated risks. It is important to make a decision before a crisis as to whether it will benefit them to go into hospital.
COVID-19 is a new illness and we do not know exactly what happens to people with more severe symptoms. What we do know is that older people and those with other underlying illnesses such as diabetes or high blood pressure have more severe symptoms and worse outcomes.
We know that the death rate increases with age. When comparing deaths in Italy and China, the death rate of people aged over 80 varies from 11 to 20 times that of people aged 50-59. The death rate of people aged over 80 is nearly twice that of people aged 70-79. The death rate of people aged 70 to 79 is around three times that of those aged 60-69 which in turn is around three times that of those aged 50-59.
People with COVID-19 who have difficulty in breathing and low oxygen levels may be offered admission to the hospital for oxygen treatment and other interventions. If they are older or have other illnesses, they may have an increased risk of poor outcomes.
If people are admitted to hospital, most hospital policies do not allow any visitors in order to reduce infection rates.
People with dementia may find it particularly hard to understand why they are in an unfamiliar place without people who they love. They may be even more lonely and frightened than others. They may also be less able to communicate or adhere to instructions and safety measures. All these factors may lead to them having an increased risk of developing delirium during their hospital stay.
Many people with dementia are not able to make decisions for themselves and need others to support them to make decisions or to make decisions for them. The lack of visitation may make it harder for the hospital team to provide a patient-centred care plan.
It is important to plan in advance in case a person with dementia develops symptoms of COVID-19 that get worse. Medical advice is critical on whether the benefit of being admitted to hospital is worth the distress of being separated from family and isolated. These are weighty and difficult issues families must face. What are the possible outcomes? Is the hospital where the person would want to die in isolation? Equally, how would such a scenario impact on carers if they kept the person at home? Do carers have access to proper personal protective equipment (PPE) to avoid exposure?
Each country should have governmental guidance on how and when to seek further treatment if their loved one’s condition deteriorates and families should be encouraged and supported to access this information. In the United Kingdom, the National Institute for Health and Care Excellence (NICE) has developed Information to support decision making for patients, families, and the public, encouraging people to reflect on such questions as:
How will critical care treatments help the person in the short and long term?
Could critical care treatments offer a quality of life that is acceptable to the person?
Could critical care treatments help achieve a patient’s goals for a good life?
Are there non-critical-care treatments that may help the person and be more comfortable for them?
Families should consider developing advance care plans or directives to ensure that a patient’s wishes are considered when planning care in the hospital. Does the person want to have a DNAR (do not attempt to resuscitate) directive? What are the individual’s wishes around the end of life care?
Health systems should provide access to palliative care services, in hospitals and outside the hospital, for persons critically ill with COVID-19 who either choose not to be hospitalized, choose not to pursue all life-sustaining care in accordance with their wishes to avoid suffering, or who cannot be saved despite all attempts at prolonging life.
Care homes need to consider plans in conjunction with residents and their families in case of COVID-19 developing in their residents. Are there doctors willing to visit residents with suspected infections? Are hospitals willing to accept admissions? If not, what facilities are available for treating persons in the care home? Or for palliative care if their condition deteriorates?
The paper can be accessed here.