Nursing Opinion

Coronavirus has shone a light on the true impact of dementia 

Dr Hilda Hayo, CEO and Chief Admiral Nurse at Dementia UK  

Society is blind to the true impact of dementia, which extends far beyond the person with dementia themselves. Families living with dementia are being forced to survive without specialist advice and guidance, which, after years of austerity, has become increasingly difficult to access. This has caused increased distress for all concerned and, in some cases, has led to family breakdown. Of course, this was before the coronavirus. The pandemic has acutely shone a light on these struggles, with family carers becoming overwhelmed by life in lockdown. People diagnosed with dementia are also disproportionately affected by coronavirus, as recent ONS statistics have shown. Now more than ever, the increasing numbers of people with dementia and their carers, both family and professional, need recognition and support in the struggles they face.

The effects on the family

Through calls to our Admiral Nurse Dementia Helpline, we are seeing an increasing number of families becoming overwhelmed in their role as carers, forced to spend long periods of time indoors with their loved ones,  who are often unable to understand what’s happening. Many carers had previously relied upon day care centres and activity groups  for support. Without these organisations, families are forced to provide round the clock care with little recognition, support or  respite. This is taking its mental and physical toll during what is undisputedly one of the greatest external challenges dementia-affected families have ever faced.

Furthermore, we are hearing cases in which families are unable to get access to priority shopping slots in supermarkets due to a wider failure to acknowledge them as vulnerable. For families with dementia, obstacles to daily tasks like food shopping can be a source of intense anxiety.

The effects on the person with dementia

For people with dementia, the loss of routine brought on by lockdown can be particularly distressing, especially when many are unable to understand why this is happening. From a health perspective, people with dementia are more likely to live with secondary conditions which can make them particularly susceptible to the virus. For a hospital patient with dementia, being attended by staff wearing PPE can cause additional distress and confusion. The lack of family visitors can also cause further anxiety which very busy healthcare staff may find difficult to manage.

As the virus continues to spread, we are seeing vulnerable people with complex needs being left behind. For those living with dementia to be able to get the level of support necessary during these times, they need to be seen as deserving of holistic and specialised care.

The effects on professional carers and those working within the health and social care systems

While family members are overwhelmed at home, workers in care homes are also experiencing exhaustion, isolation and stress. Many people within this setting are forced to isolate from their families  to protect those in the homes. Moreover,  people with dementia are likely to be unable to understand the need for increased hygiene standards and social distancing. Many carers have therefore been left  exposed in an environment of compromised hygiene,  in which there is a lack of PPE, testing, and adequate social distancing. The staggering number of deaths we have seen in the care sector also brings a heavy emotional toll. We need to remember that these workers are on the frontline too and will need support after this lockdown.

Moving beyond lockdown

For many, the gradual easing of lockdown will signal a return to normality and a cause for celebration. For those living with dementia and their families, however, a return to normality will have a very different meaning. Months of being inside  may have caused a loss of familiarity with the outside world,  making the transition into a post-lockdown world difficult. With people with dementia only being classified as ‘moderate risk’, there are fears that support will be inadequate, despite the fact that people with dementia are more susceptible to the virus, and dying in greater numbers than before.

After lockdown, bereaved families will have to come to terms with not having said a final goodbye to their loved one. In many cases, they may not even have been able to attend the funeral. This will have a lasting effect on these families long after coronavirus is just a painful memory. They will need specialist advice and support to come to terms with what has happened, and we receive many such calls of this nature on our Helpline

An improved world for people with dementia

Coronavirus has shown us how  quickly we can adapt. We have seen significant changes already with increased investment in social care and calls to protect the most vulnerable in society, who are predominantly over the age of 70. These have clear links to dementia, which is so often seen as a social care crisis and a condition largely caused by old age. It’s vital that we take what we are learning  from this crisis to the field of dementia care, truly unifying the separate health and social care systems. Everyone will need respite after this, and that includes families with dementia.

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