Diagnosis, treatment, care and support during COVID-19

The following piece is from our third 'From Plan to Impact' report and written by ADI's Communications and Policy Manager, Annie Bliss, the main author of the report. In this piece, she writes about the impact of the COVID-19 pandemic on diagnostic, treatment, care and support services for people living with dementia.

Older people, especially those living with dementia, are especially vulnerable during the COVID-19 pandemic. Age is the biggest risk factor for both COVID-19 and dementia. People living with dementia are largely in the age group most likely to suffer from severe symptoms of COVID-19; face difficult decisions around healthcare treatments and hospital admissions; and especially in lockdown or quarantine, may become more anxious, stressed, and withdrawn during the outbreak. However, coverage and attention around dementia has been largely excluded from the main cited non-communicable diseases (NCDs) or “underlying conditions” in initial data and research findings, despite the fact that the behavioural or emotional symptoms experienced by people living with dementia are directly impacted by the outbreak, with potentially serious implications.

The COVID-19 pandemic has highlighted another global crisis: care. In many countries, problems surrounding a lack of funding, training and resources in care environments, and a growing demand for care, have been exacerbated by this global infectious disease outbreak.

COVID-19 has sadly highlighted the degree of ageism which still permeates many countries’ social structures and institutions. One of the biggest challenges for governments has been responding to the spread of the virus in long term care settings such as care homes. In many places, care homes have become hot spots for the spread of the virus, even where lockdowns have been enforced, and this is complicated by a number of factors like the difficulty of enforcing social distancing; access to personal protective equipment (PPE); the use of agency staff, for example when regular staff have tested positive; and the prevalence of other NCDs. In several European countries in particular, the failure of governments to place adequate emphasis on proactively addressing the spread of the virus in care home facilities at the outset of the outbreak (by lockdown, securing adequate PPE, and testing residents coming from hospitals), has resulted in disproportionate COVID-19-related mortality in long-term care facilities. There was a general focus on patients coming into intensive care and concerning reports in Italy of care homes being paid to move non-critical COVID-19 patients into their facilities.

Moreover, countries including the UK, Italy, France and Spain, did not initially release data on COVID-19-related mortality in care homes, despite the rates being proportionally higher than the general population. This is largely due to a lack of testing, making it difficult to determine cause of death; it is hard to differentiate in care homes between people who have pneumonia because they have pneumonia and those who have pneumonia as a result of COVID-19. Researchers based at the London School of Economics (LSE) created the Long-Term Care responses to COVID-19 (LTCcovid) group, which has published data, revealing that more than half of all coronavirus deaths in these countries were among care home residents.

Conversely, many Asian countries, heeding lessons from the SARS (severe acute respiratory syndrome) pandemic, made more concerted efforts to ensure COVID-19 did not disproportionately affect care homes, promptly locking down care homes, providing PPE and introducing widespread testing.

In view of the widespread global shortages of medical resources, especially ventilators, it is vital that healthcare professionals have clear guidelines to facilitate extremely difficult decision making – often in pressurised triage situations – about access to treatment. Decisions should not be made based purely on age or the existence of a condition like dementia, which would be in violation of that individual’s human rights. Issues relating to under-resourcing and unpreparedness of health systems, highlighted and exacerbated by the current crisis, have provided concrete lessons which we must heed.

The prevalence of non-communicable diseases (NCDs) including mental health conditions, stroke and cardio-vascular disease, is likely to increase as a result of COVID-19. We are yet to see the immediate impact on dementia, with fears that the pandemic will have interrupted the diagnosis pathway for many and we are only just starting to see data about death rates associated to people with dementia. The chronic underfunding of NCDs (currently around 3 per cent of all global health funding yet accountable for a majority of morbidity and mortality) is leading to infrastructural inadequacies that will lead to health systems collapsing – as has been the case in Italy, Spain and now the USA – in the face of large disease outbreaks. People living with NCDs must be given commensurate funding and support services to manage their conditions.

The COVID-19 pandemic has highlighted a critical need for innovation in the provision of dementia care at all levels of health and social care systems globally – from primary care doctors and nurses, neurologists and other specialists, to both formal and informal carers – to join the field of ageing and geriatrics in response to growing need. It is imperative that governments recognise the need to integrate and coordinate health and long-term care and to fund both equally.

International human rights instruments specifically supporting the rights of older persons must be developed and adequately enforced at the national level. Existing instruments do not adequately support people against age discrimination, especially given that less than 1 per cent of Human Rights Treaty Bodies show recommendations for older persons.

A research report by ADI, GADAA and Alzheimer’s Pakistan highlighted the additional challenges posed by humanitarian emergencies on people with dementia. It also showed the challenges that barriers such as stigma and poor access to social and health care systems pose even at times of peace, and these challenges are exacerbated when the existing health systems or social networks relied upon breakdown, disproportionately affecting those with poor access to these structures in the first place.

The WHO’s Global action plan, which was unanimously adopted by all 194 Member States, includes a commitment to planning for humanitarian emergencies which considered individual support for people with dementia and community psychosocial support. ADI calls on all governments to include dementia in their COVID-19 response plans.

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