Improving the care experience of patients with Alzheimer’s and dementia during the COVID-19 pandemic and beyond

Jenny Brooks looks at data from a 2020 survey conducted for the Care Quality Commission to understand the inpatient experience of those with Alzheimer’s or dementia during the COVID-19 pandemic.

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  • Jennifer Brooks Public Affairs
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This article presents results from a survey of patients who had inpatient care in NHS hospitals at the peak of the first wave of the pandemic in March, April, and May 2020. The survey collected information about the experiences of people staying in hospital, with or without COVID-19. Within this, information was collected on long-term conditions, providing invaluable information on the differences in care experience between groups of patients, such as those with Alzheimer’s or dementia.

Patients with Alzheimer’s or dementia had a worse experience of care during the pandemic than patients with other long-term conditions

This was particularly the case for patients with Alzheimer’s or dementia who had COVID-19, who on average scored their overall care experience 6.7/10 (where 10 is a “very good experience”). This was significantly lower than those with any long-term condition (who scored their experience 7.9/10 on average) and those without a long-term condition (8.4/10).

This data highlights that more needs to be done to improve the experience of patients with Alzheimer’s or dementia to ensure their specific needs are addressed. Previous research, conducted before the COVID-19 pandemic, showed that people with cognitive impairment, such as dementia, have poorer outcomes and poorer experiences of care in hospital.1 The CQC survey data suggests this difference in experience has continued during the pandemic, with Alzheimer’s and dementia reporting poorer experiences whether they have COVID-19 or not. Therefore, it is important to investigate how their experience differs to those with other long-term conditions to drive improvements.

Communication and information posed specific challenges for patients with Alzheimer’s or dementia

A diagnosis of dementia can include memory loss, impaired communication and difficulty expressing language or reasoning effectively.2 This leads to specific challenges for patients with Alzheimer’s or dementia in communicating their needs to hospital staff and understanding information. These communication challenges can leave care needs in hospital unmet, causing frustration and increasing behavioural and psychological symptoms of dementia.3 Therefore, communication challenges must be addressed in order to care effectively for patients with Alzheimer’s or dementia and improve care experience.4

The CQC survey showed that patients with Alzheimer’s or dementia found the following aspects of communication more difficult than patients with other long-term conditions:

  • Getting help from a member of staff when attention was needed;
  • Getting answers they understand when asking staff questions about their care or treatment; and,
  • Receiving the right amount of information about their condition or treatment.

Patients with Alzheimer’s or dementia were less likely to report these things happening successfully, compared to patients with other long-term conditions or no long-term condition. This demonstrates that adaptations are needed both to how staff communicate with Alzheimer’s or dementia patients, as well as how the patients themselves are supported to communicate.

Communication challenges are exacerbated in the COVID-19 pandemic

The pandemic poses additional difficulties around communication for patients with Alzheimer’s or dementia. This is because more measures need to be communicated such as the use of PPE, social distancing, and enhanced hygiene practices.4 The use of PPE can also directly decrease the ease of communication by making speech quieter or harder to understand.5

This was reflected in the survey findings. Those with Alzheimer’s or dementia were least likely to “always understand what staff were saying through PPE” compared to other patients. Specifically, less than half of patients with Alzheimer’s or dementia (47%) said they could always understand, compared to 79% with no long-term condition and 72% with any long-term condition. This was true for patients with or without COVID-19, as shown on the graph below. This demonstrates that special effort and adaptations are needed to effectively communicate with patients with Alzheimer’s or dementia with or without a COVID-19 diagnosis, whilst PPE remains a necessity.

Research has identified some specific techniques that could facilitate communication whilst wearing PPE, particularly for patients with Alzheimer’s and dementia. These include:

  • Over articulating to naturally slow speech6
  • Gestures to reduce the need for speech and demonstrate specific actions6
  • Providing written information alongside spoken information to reduce reliance on working memory7
  • Using picture boards to communicate unmet needs8

Overall, caring for patients with Alzheimer’s or dementia in a hospital setting is complex and can lead to poor care experiences. During the pandemic, additional challenges worsened this. One way to improve the care experience of these patients could be improving effective communication so unmet needs are understood and catered to. Research has shown there are numerous tools to do this, specific and non-specific to the pandemic. These tools are likely to be most effective when delivered as part of a tailored person-centred approach to healthcare, an approach which is high on the NHS agenda.

Technical note

  • This article presents results from a survey conducted for the Care Quality Commission, designed to collect information about the experiences of people who had inpatient care in an NHS hospitals at the peak of the first wave of the pandemic, as England went into national lockdown, in March, April and May 2020.
  • Patients were randomly selected from a sample frame provided by NHS Digital, using Hospital Episode Statistics. The survey included patients who tested positive for COVID-19 (on admission or diagnosed during their stay) and patients in hospital who did not receive a positive COVID-19 test result.
  • For overall satisfaction, scores were given on a scale of 1 – 10, with 10 being “I had a very good experience” and 0 being “I had a very poor experience”.
  • The survey was conducted using a mixed methods approach, combining online and telephone modes. It achieved a 42% unadjusted response rate in just under four weeks. Fieldwork took place between 14 August and 9 September 2020.
  • A total of 10,336 people took part in the survey. All respondents were aged 16 years or over at the time of their hospital stay and were discharged from hospital between 1 April 2020 and 31 May 2020.
  • Data were weighted to produce results for the overall population of inpatients discharged between 1 April and 31 May 2020, and for the COVID and non-COVID populations individually.
  • The full results can be found on the CQC website.


  1. Care Quality Commission, 2013. Care Update (Issue 2: March 2013). Care Quality Commission; Glover, A., Bradshaw, L.E., Watson, N., Laithwaite, E., Goldberg, S.E., Whittamore, K.H. and Harwood, R.H.
  2. Diagnoses, problems and healthcare interventions amongst older people with an unscheduled hospital admission who have concurrent mental health problems: a prevalence study. BMC geriatrics, 14(1), pp.1-10.
  3. Bessey, L.J. and Walaszek, A., 2019. Management of behavioral and psychological symptoms of dementia. Current psychiatry reports, 21(8), pp.1-11.
  4. Wang, H., Li, T., Barbarino, P., Gauthier, S., Brodaty, H., Molinuevo, J.L., Xie, H., Sun, Y., Yu, E., Tang, Y. and Weidner, W., 2020. Dementia care during COVID-19. The Lancet, 395(10231), pp.1190-1191.
  5. Knollman-Porter, K. and Burshnic, V.L., 2020. Optimizing effective communication while wearing a mask during the COVID-19 pandemic. Journal of gerontological nursing, 46(11), pp.7-11.
  6. Janse, E. (2009). Processing of fast speech by elderly listeners. Th e Journal of the Acoustical Society of America, 125(4), pp. 2361–2373. https://doi. org/10.1121/1.3082117 PMID:19354410
  7. Brown, J. A., Wallace, S. E., Knollman-Porter, K., & Hux, K. (2019). Comprehension of single versus combined modality information by people with aphasia. American Journal of Speech-Language Pathology, 28, pp. 278–292. AJSLP-17-0132 PMID:30054630
  8. From Patient-Provider Communication (2020). In the public domain, accessed:

The author(s)

  • Jennifer Brooks Public Affairs

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