People with dementia have experienced a greater disruption to their lives due to the COVID-19 pandemic than the general population because of their vulnerability, reliance on informal and formal support, and disruption of routines. COVID-19 has led to changes to the way we live our lives. It has led to new rules such as the mandatory wearing of facemasks in certain situations, and discontinuation of and reductions in services that older people with dementia may have relied on. These changes have affected the physical and mental health of people with dementia and increased their reliance on primary care. This article outlines how the COVID-19 pandemic has affected people with dementia and how the practice nurse can communicate with and support individuals with dementia.
The World Health Organization's definition of dementia is as follows:
‘Dementia is a syndrome – usually of a chronic or progressive nature – in which there is deterioration in cognitive function (ie the ability to process thought) beyond what might be expected from normal ageing. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not affected. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation.’
In the UK, more than 920 000 people are living with dementia (Wittenberg et al, 2019). Most people with dementia are over 65 years of age. Over half of people with dementia have mild dementia, around a third have moderate dementia and an eighth have severe dementia (Prince et al, 2014). People with dementia experience a decline in cognitive function and may struggle to make sense of the world. Familiar people, surroundings and routines help the person with dementia to remain orientated and to feel secure. Table 1 illustrates how different degrees of dementia affect the person.
Table 1. How different levels of dementia affect an individual
| Mild dementia |
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| Moderate dementia |
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| Advanced dementia |
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The older person with dementia, like other older people, may have difficulties with mobility, vision and hearing (Akpek and Smith, 2013: Alattar et al, 2020; Freiberger et al, 2020).
The individual may also have long-term conditions, such as diabetes, heart failure and hypertension, which are common in older people (National Institute for Health and Care Excellence [NICE], 2016; NICE, 2018; Public Health England, 2019).
How the COVID-19 pandemic has affected people with dementia
The COVID-19 pandemic has had a greater impact on people with dementia because people with dementia are often reliant on support from family, friends and medical and social care professionals. The person with dementia may struggle to understand and comply with changing rules and regulations. Figure 1 demonstrates how COVID-19 has impacted on the lives of people with dementia.
Figure 1. The impact of COVID-19 on the person with dementia
Family support
Most – around two-thirds of – people with dementia live at home with a spouse or family member; however, around a third live alone (Miranda-Castillo et al, 2010). People who live alone may rely on family, friends and social events, such as dementia cafes and day centres, for company.
COVID-19 restrictions have resulted in older people who live alone being deprived of company and usual activities. The Alzheimer's Society found that people with dementia had increased memory loss, increased agitation, stress and depression and difficulty concentrating as a result of these changes (Alzheimer's Society, 2020a).
Medical and care needs
COVID-19 affects older people more than younger people and older people are more likely to require hospital care. People with dementia appear to be at even greater risk of severe infection and death (Atkins et al, 2020; Bianchetti et al, 2020). The person with COVID-19 may be cared for at home or admitted to hospital. COVID-19 infection, like all infections, worsens confusion and the person may have a delirium superimposed on dementia (Marcantonio, 2017).
Isolation, a reduction in formal and informal support, and disruption to routine have contributed to feelings of loneliness and anxiety. Some people with dementia have become very agitated, developed confusional states (delirium) and have required changes in medication. Some people have required hospital admission due to worsening dementia (Alzheimer's Society, 2020a; Wang et al, 2020).
The pandemic has led to staff shortages in health and social care, changes of care workers and a reduction in the level of support provided (Alzheimer's Society, 2020a). These changes disrupt the person's routine and can lead to deterioration in mood and ability to manage at home.
Day centres and respite facilities have closed and relatives and care givers living with people with dementia report increased stress, feelings of abandonment and have struggled to find help to manage the worsening symptoms of the person with dementia (Alzheimer's Society, 2020a).
How masks impact on communication
Due to the pandemic, staff are now required to wear personal protective equipment (PPE) including masks. The person with dementia can find masks frightening and may be unable to recognise familiar people who are wearing masks. Some staff have taken a picture of themselves, laminated it and attached it to their uniform so that the person can see what the clinician normally looks.
Sight and hearing loss become more common as people age (Alzheimer's Society, 2020b). There are 12 million people who are deaf or hard of hearing in the UK (Action on Hearing Loss, 2020). An estimated 81% of people over the age of 80 have hearing loss (Akeroyd et al, 2014). Hearing loss is associated with increased cognitive decline because it makes it more difficult to make sense of the world and affects cognitive performance (Lin and Albert, 2014; Alattar et al, 2020).
When communicating with people with hearing loss and dementia, the nurse should ensure that the person has his or her hearing aids, if worn. Background noise should be reduced and distractions minimised. The area should be well lit. The nurse should find out the person's preferred way of communicating – for example, lip reading, use of gestures and expressions (Alzheimer's Society, 2020b). The practice nurse should use clear language, use short sentences, ask only one question at a time and wait for a reply.
Standard face masks prevent lip reading, but masks with clear panels are now available and these enable people to lip read (Figure 2). Even when a person cannot lip read, these can make communication easier as more of the person's face is visible.
Figure 2. Masks with clear panels can make communication much easier.
Communicating in different ways
Many people with dementia are no longer receiving face-to-face visits from specialist services. Some computer systems such as Systm One enable clinicians to carry out secure video consultations. Telephone conversations can be used if the person does not have a smart phone.
How the practice nurse can support people with dementia
Practice nurses may find that they are offering greater levels of support to people with dementia and their families than before the pandemic when there was greater access to specialist services. In many areas the mobile person with dementia would attend a leg ulcer clinic to have treatment for a leg ulcer. Many of these clinics have closed and the practice nurse may be providing this service. The person with dementia may have been supported by specialist community dementia services but many of these are disrupted, not operating or operating a virtual service. The person with dementia and his or her family can feel abandoned and can struggle to manage worsening symptoms. The practice nurse can provide information that may help the caregiver and signpost to other services (see Further information and resources).
The practice nurse can identify people with dementia, especially those who are most vulnerable, and make contact with them to identify any emerging problems, such as problems with care and support, worsening dementia symptoms or new health problems. When people with dementia and caregivers contact the practice nurse reporting worsening symptoms, the practice nurse can work with the team in the practice to support the person. The practice nurse can also link with relevant specialist services, such as the diabetes team, to support people with dementia and their caregivers.
The practice nurse can advise caregivers to try to maintain as normal a routine as possible for the older person.
The practice nurse can help support caregivers who are struggling to manage with reduced support. Sometimes caregivers request hospital admission for their relative. The practice nurses may be able to support the family and avoid unnecessary and potentially risky hospital admission by referring to intermediate care services who can provide short term care and support while assessments of the carer and the person with dementia are being carried out.
Conclusion
People with dementia and their caregivers have been severely affected by the COVID-19 pandemic. At present there is no indication of when normal services will be resumed and practice nurses can do a great deal to support the most vulnerable of older people, those living with dementia.
Further information and resources
- Action on Hearing Loss. Face coverings: how the regulations apply to you. 2020. https://actiononhearingloss.org.uk/coronavirus-response/face-coverings-how-the-regulations-apply-to-you/
- Age Concern. Coronavirus: your questions answered. 2020. https://www.ageuk.org.uk/information-advice/coronavirus/coronavirus-guidance/coronavirus-faqs/
- Alzheimer's Society. Coronavirus support for people affected by dementia. 2020. https://www.alzheimers.org.uk/get-support/coronavirus Helpline: 0333 150 3456
- Alzheimer's Society. Sight and hearing loss with dementia. 2020. https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sight-hearing-loss
- Dementia UK. Coronavirus (COVID-19): information for families looking after someone with dementia. 2020. https://www.dementiauk.org/get-support/coronavirus-covid-19/ Helpline: 0800 888 6675
KEY POINTS:
- The COVID-19 pandemic has hugely affected the lives of people with dementia
- People with dementia have experienced worsening psychiatric symptoms such as anxiety, agitation, stress, depression and memory loss
- Most are more vulnerable to COVID-19 infection and are more likely to require hospital care if they develop COVID-19
- Practice nurses can help support people with dementia and care givers by signposting people to sources of information and support, providing direct care such as wound care, liaising with specialist services and helping to manage physical and mental health
CPD reflective practice:
- Do you consider that people with dementia have been well supported during the COVID-19 pandemic? What could have been done differently?
- What specific risks do people with dementia face during the pandemic and how can you support them to reduce these risks?
- What steps would you take to improve communication with a individual while you are wearing a face mask?