Recovery and rehabilitation from long COVID for people with dementia

Long COVID for people with dementia can cause worsening of cognition (confusion or memory) and poorer mental and physical health. Rehabilitation is a plan of treatment that supports the person to recover as much of their lost abilities, independence and wellbeing as possible.

What is ‘long COVID’?

Most people who get COVID-19 start to feel better after a few weeks. A significant minority, however, still feel unwell. For people aged over 70 who have had COVID, this includes more than one person in five. Several weeks after the start of the illness they may still have symptoms, or they may have developed new symptoms – both known as long COVID. These symptoms can affect the body and mind, and stop the person getting on with their life. 

Long COVID seems to be more likely in older people but is not linked to how severe the initial COVID-19 illness was. People who had mild COVID-19 managed at home seem as likely to get long COVID as those who had severe COVID-19 and needed treatment in hospital. 

Anyone who thinks they may have long COVID should contact their GP. The NHS website  Your COVID Recovery also has good advice and a more complete list of the many symptoms. These include:

  • breathlessness and fatigue
  • difficulties with day-to-day activities
  • anxiety, depression and other mental health problems.

Separately, a person who has been in intensive care – for example, with severe COVID-19 – may have different long-term symptoms. The NHS has information on post-intensive care syndrome.

Our dementia advisers are here for you.

What is the treatment for long COVID?

To diagnose long COVID, a health professional will take the person’s medical history, examine them physically, check for symptoms and ask about day-to-day activities and how they are feeling. Investigations such as a chest x-ray, blood test or exercise test may be appropriate.     

Examples of how different professionals may help with common COVID symptoms are shown below. 

Breathlessness and fatigue 

The person may have shortness of breath, a tight chest and get tired much more easily than before.

A physiotherapist can advise on coping with breathlessness and breathing techniques. They will also help the person do physical exercises, such as seated exercises, to gradually build up their strength and balance. 

Day-to-day skills

Dementia makes it harder for someone to remain independent or retain everyday skills (for example, cooking or showering). Long COVID may make these difficulties worse, sometimes because it has made someone’s memory or concentration worse (‘brain fog’). 

An occupational therapist will agree realistic goals with the person and then plan how to meet these. This will mean creating a personalised schedule of activities and rest breaks for the day – and following the progress of each activity. An occupational therapist can also advise on equipment and adaptations.

It is important to note that sometimes the person loses abilities due to the progression of their dementia or the effects of lockdown, and not from long COVID. This can mean that not all treatments will work for them.

Mental health

The most common mental health symptoms of long COVID – anxiety and depression – are already known symptoms of dementia. In long COVID they may be a reaction to other ongoing symptoms (for example, fatigue) or lost self-confidence.

Our advice on supporting a person with dementia who has anxiety and depression may be useful. A doctor may offer medication or talking therapies, or refer the person to a psychiatrist, clinical psychologist or counsellor.

Person-centred rehabilitation

Whatever support is put in place for a person with dementia, this should start with what matters most to them and what they need. Depending on these needs, a range of appropriate healthcare professionals may work with the person to help them recover as best as they can. 

Long COVID in hospital

If someone in hospital develops long COVID (or post-intensive care syndrome), their recovery will start with the hospital rehabilitation team before they leave. The person may then be discharged home with extra help or to a community hospital for intermediate care. 

Long COVID at home

If someone at home develops long COVID, their GP might refer them to a single professional (such as an occupational therapist) or – more often – to a community multidisciplinary rehabilitation team made up of professionals from across health and social care (such as those in the examples above). A completed copy of our This is me leaflet can help professionals get to know the person better.

Managing symptoms and measuring progress

In all cases, the essence of rehabilitation is to support the person to recover and maintain abilities and independence. A professional working in rehabilitation will usually agree a personalised plan with the person. This will include advice on how to manage symptoms, as well as setting out goals the person wants to achieve (and how they will measure progress).

The person may have good and bad days. Recovery can take a long time and the person may need a lot of support, from friends and family as well as professionals.

Moving forward stronger report

Bringing together the views of 10 charities and allied health professional organisations, this report shines a light on the deterioration experienced by many people with long-term conditions during the pandemic.

Read the report
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