“It’s just crossed wires.”
“It’s just age.”
“They’re just a bit forgetful.”
It’s time to challenge these perceptions. Dementia doesn’t just make you forgetful, and it’s not a natural part of ageing; it’s a serious, life-limiting disease that is ultimately terminal. Yes, you read that correctly: dementia is a terminal illness, but it is insufficiently recognised as such. This lack of recognition of the terminal nature of the disease, despite it being the leading cause of death in the UK, results in many patients not receiving the palliative care they desperately require . Downplaying dementia and its impact is a disservice to people with dementia and their loved ones; it begets a lack of public interest and funding, delayed diagnosis and, consequently, improper care. So, this World Alzheimer’s Day, this is a call to action for us to stop normalising the disease.
Dementia, the most common form of which is Alzheimer’s disease, is not a natural, inevitable part of ageing. It is a disease, and a devastating one at that. The effects are tangible and stark: a brain affected by Alzheimer’s disease shrinks at 400% the rate experienced as part of normal ageing and can weigh around 140 g (about the weight of an orange) less than a healthy brain. This fact triggered a powerful campaign by Alzheimer’s Research UK called #ShareTheOrange, in which they’ve partnered with celebrities such as Samuel L. Jackson, who are shown clutching an orange to highlight the amount of brain matter lost .
Distressingly, the ‘forgetfulness’ that results from this decimation of the brain does not translate to blissful ignorance. Actually, people with dementia are often alert and aware of things happening, but are trapped in a limbo of not being able to articulate or even understand. If you’ve ever seen the panic and distress inflicted when someone realises that nothing quite adds up, you’ll never forget it. The memory deficits associated with dementia can be so profound that the people with the disease no longer recognise close friends and family members, have severely limited vocabularies (fewer than six words in one study), become incontinent and are no longer able to walk . Beyond memory loss, the disease is characterised by cognitive impairment, behavioural disturbances, mood disorders, increased dependency and physical frailty . People with dementia also experience physical effects and can be plagued by distressing symptoms such as pain, pressure ulcers and shortness of breath .
After causing such extreme limitations to lives, dementia may ultimately result in death. Dementia’s position as the leading cause of death in the UK isn’t recent – it has held this position since 2015 . If you weren’t already aware of this, then this is just another indication of the problem. Also, worryingly, the number of people dying with dementia is massively underestimated; studies have approximated that for over 40% of people who die with dementia in the UK, the disease is not recorded on their death certificates. Such under-reporting challenges our ability to comprehend the true impact of the disease and diminishes the level of priority it is allocated in terms of funding for medical research .
The trauma caused by the disease carries on well after death, eating away in the memories of their loved ones. From as early as my teenage years, my stomach has twisted every time someone tells me something I can’t remember saying or doing, and every time I walk into a room and can’t remember what for. It triggers a series of memories: the first time we realised my grandmother – a wonderful and previously fiercely independent woman – was no longer able to babysit my teenage sister; the time my dad – her son – had to run, panic-stricken, around the village because she had left the house and was missing; the time he had to build a gate in the front garden to stop her from getting out; the first time she couldn’t remember her own son.
You might think that care homes are a simple fix – but think again. Although they can be the best option for some people with dementia (and many provide excellent care), unfortunately, care homes can be subject to problems rooted in the fact that they are part of the social care system, not the healthcare system. Both systems are chronically underfunded, and fundamental flaws in the divide between these two leave tens of thousands of people with dementia in the UK without the right support to do basic tasks, such as getting dressed, eating and going to the toilet .
In addition, studies indicate that the treatment of care home residents with dementia who are dying is not consistent with a palliative approach, and can include the use of aggressive and forceful treatments, such as tube feeding, which may be of limited benefit and exacerbate physical suffering. Research indicates that patients with cancer who have end‑of‑life discussions with their physicians are less likely to receive aggressive care in their final week of life than those who do not have such discussions . Sadly, because of the cognitive effects of dementia, by the time a person with the disease is nearing the end of their life (or even potentially at the point of diagnosis), their condition has deteriorated to such an extent that it is difficult for them to participate in these discussions. This emphasises the dire need for earlier identification and therapeutic intervention, and improvement of the quality of palliative care to ease suffering.
Now add to all of this the COVID-19 pandemic. Isolation and social distancing have been and continue to be difficult for the general population, but imagine having to shield without any recollection or understanding as to why. The crowds of mask-clad faces are unsettling even with context, so imagine what it would be like without this. The pandemic elevates risks for people with dementia to even greater heights; a quarter of people who died with COVID-19 in England and Wales had dementia, making it the most common pre-existing condition related to COVID deaths (figures as of May 2020) [6, 7].
In care homes, the situation is even worse; if people with dementia survive the pandemic, they’ll likely have to grieve the loss of other residents or friends who have died. Residents are also likely to absorb the stress and anxiety of care home staff, and they’ll undoubtedly be affected by loved ones being unable to visit, and they may not be able to understand why . This means they’re losing familiar faces that, to them, are a lifeline – an anchor to recognisable times.
According to a 2011 Gallup survey, old age is supposed to be one of our happiest times; our sense of well-being follows a U-shaped curve across our lives and is at its highest in childhood and old age, with a dip in the intervening years . So, dementia not only robs its victims of their identity and life but also what is supposed to be one of the happiest periods of their lives – their golden years turned dark.
So, what can you do?
- Challenge your own perceptions of dementia and those of others
- Fundraise for and/or donate to charities such as Alzheimer’s Research UK (https://www.alzheimersresearchuk.org/) or Alzheimer’s Society (https://www.alzheimers.org.uk/)
- Reduce your risk of developing dementia by :
- Eating a healthy, balanced diet
- Maintaining a healthy weight
- Exercising regularly
- Keeping your alcohol intake within the recommended limits
- Quitting smoking
- Keeping your blood pressure at a healthy level
- Educate yourself on how to support those with dementia, not just for loved ones but in case you come across a stranger who needs help
- If you’re a carer for someone with dementia, remember that your needs are important too; there are many services you can contact for practical or emotional support (e.g. call the Admiral Nurse Dementia Helpline on 0800 888 6678 or send an email to firstname.lastname@example.org) 
For information on the support available to people affected by dementia, please visit https://www.alzheimersresearchuk.org/dementia-information/support-for-carers/.
If any of these themes have been upsetting, or if you need someone to talk to, there are lots of organisations that can help, such as Samaritans (call 116 123 or email email@example.com) or Give Us A Shout (text ‘SHOUT’ to 85258) [12, 13].
- Mitchell SL et al. N Engl J Med 2009; 361 (16): 1529–1538.
- Alzheimer’s Research UK. Samuel L. Jackson stars in powerful dementia campaign to challenge misunderstanding of condition. Available at: https://www.alzheimersresearchuk.org/samuel-l-jackson-share-the-orange/#:~:text=In%20the%20film%2C%20Samuel%20explains,it%20is%20a%20physical%20disease%E2%80%A6%E2%80%9D. Accessed September 2020.
- Hoe J et al. Alzheimer Dis Assoc Disord 2009; 23 (3): 285–290.
- Alzheimer’s Society. The UK’s biggest killer: Why are deaths from dementia on the rise? Available at: https://www.alzheimers.org.uk/blog/research-dementia-UK-biggest-killer-on-the-rise. Accessed September 2020.
- Alzheimer’s Society. Dementia UK report. Available at: https://www.alzheimers.org.uk/about-us/policy-and-influencing/dementia-uk-report. Accessed September 2020.
- Alzheimer’s Society. Coronavirus, dementia and the higher risks: People with dementia must be better protected. Available at: https://www.alzheimers.org.uk/news/2020-05-19/coronavirus-dementia-and-higher-risks-people-dementia-must-be-better-protected. Accessed September 2020.
- Office for National Statistics. Coronavirus (COVID-19) roundup. Available at: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/articles/coronaviruscovid19roundup/2020-03-26#causeofdeath. Accessed September 2020.
- Alzheimer’s Society. How care homes have been affected during the coronavirus pandemic. Available at: https://www.alzheimers.org.uk/get-support/coronavirus/dementia-care-homes. Accessed September 2020.
- The New Yorker. Why we can’t tell the truth about aging. Available at: https://www.newyorker.com/magazine/2019/11/04/why-we-cant-tell-the-truth-about-aging. Accessed September 2020.
- National Health Service. Can dementia be prevented? Available at: https://www.nhs.uk/conditions/dementia/dementia-prevention/. Accessed September 2020.
- Dementia UK. What is an Admiral Nurse and how can they help? Available at: https://www.dementiauk.org/get-support/admiral-nursing/. Accessed September 2020.
- Contact a Samaritan. Available at: https://www.samaritans.org/how-we-can-help/contact-samaritan/. Accessed September 2020.
- Give Us A Shout. Get help. Available at: https://giveusashout.org/get-help/. Accessed September 2020.
Author: Amanda Hyne. Senior Medical Writer, Porterhouse Medical Group