The hidden impact of Alzheimer’s disease
Published 01 September 2019
Caring for people with Alzheimer’s disease and related dementias is expensive, but a newly published analysis suggests that the current cost estimates are just the ‘tip of the iceberg.’ Ahead of World Alzheimer’s Month, the publication highlights the need for coordinated research to measure and tackle these hidden costs.
Freeha Irshad first noticed that something was amiss with her 84-year-old father, Rana, while staying with him for several weeks because her mother was in hospital. A Relationship Manager, Freeha was trying to work from the family dining table, but Rana kept interrupting her. “He would come in every 5, 10 or 15 minutes, stand there and look at me, and then maybe go to the kitchen,” says Freeha, who ended up timing these interruptions, they were so strange and out of character. “I just thought, what are you doing?”
There were other things too: Rana kept asking for the windows and doors to be opened or closed because he was too hot or too cold; when Freeha cooked him healthy meals, he’d complain about the lettuce on the side, insisting on carrots instead; and when his lunch was delayed by just 30 minutes because she had to make a work call, he became agitated.
It was almost like a child acting out, where you just want to say ‘go and sit on the naughty step’, or ‘what are you doing, I’ve got important things to do; I’ll get to you in a minute’,”
At the time, while she was concerned by his behaviour, she and her brothers assumed he was just anxious about his wife’s health. In fact, these uncharacteristic episodes were early symptoms of Alzheimer’s disease, and Freeha’s family’s experience is a common one.
By 2030, it is estimated that the global cost of dementia could grow to US$2 trillion, which could overwhelm health and social care systems
Every three seconds, someone around the world develops Alzheimer’s disease or a related dementia (ADRD), and the number of people affected by these diseases is rising rapidly. So too is the global cost, which threatens to overwhelm health and social care systems. However, a new report describes this as merely the ‘tip of the iceberg.’ There are also indirect and intangible costs, such as the impact of dementia on caregivers and employers, which start to mount a long time, even decades, before someone receives a diagnosis.
Delays to diagnosis
A recent survey of caregivers by Alzheimer Europe revealed that it takes an average of two years between someone’s caregiver first noticing that something isn’t quite right, to receipt of a diagnosis. Often, they don’t necessarily link symptoms such as anger and depression, in addition to memory loss, with a serious illness like Alzheimer’s disease. When they finally do see a doctor, their concerns aren’t always taken seriously, and then there may be long waits to see a specialist or to get test results.
In Rana’s case, it was his General Practitioner who initiated investigations into his brain health, because he kept falling. This was in the autumn of 2017 – just under a year after Freeha started noticing his behaviour changes.
When we got the diagnosis, there was a collective sigh of relief where we were like, ‘we know what it is now, he’s not just being awkward’,”
The family could now come to terms with the cause of his behaviour, and shift to a place of love, care and compassion.
A missed opportunity
Using records from the Danish National Patient Registry, increased healthcare costs were identified in patients as early as 10 years prior to a diagnosis of ADRD.
However, had Rana been diagnosed earlier, there may have been more that he and his family could have done to prepare themselves for the future. One advantage of early diagnosis is that it enables people to plan and discuss their care, including whether they would like to participate in clinical trials for new treatments. In addition, there are tools and techniques that might help someone diagnosed with dementia lead a relatively normal life, and for longer, says Paola Barbarino, CEO of Alzheimer’s Disease International. There are also treatments and risk reduction strategies, such as avoiding social isolation and keeping the brain active, which have been shown to slow the progression of symptoms:
Greater awareness of early dementia symptoms by family doctors is urgently needed: currently, in many countries, they are particularly unsure about what to suggest that people should do once they receive a diagnosis, Barbarino adds.
As the number of people with dementia grows, and early screening becomes more commonplace, it is also important to assess which interventions are likely to have the biggest impact on the lives of individuals, their caregivers and wider society. For that, we need a better understanding of what the socioeconomic costs are in the first place.
The hidden costs
The new study aimed to identify the current gaps in our understanding of the impact of dementia, as well as providing recommendations on how researchers can start to gather this information.
One issue it identified was the insidious impact of the disease, with costs that extend far beyond the person affected and the formal healthcare system. “When somebody falls, or goes into hospital and has delirium, or is under-productive at work, or the spouse has taken time off and is depressed; there’s a cost that exists, and we should be able to measure it,” says Dr Alireza Atri, a neurologist specialising in the early diagnosis and treatment of Alzheimer’s disease and related dementias, and lead author of the report. The first step is to simply to acknowledge the existence of these costs.
For instance, although it is relatively easy to measure the cost of an individual’s drugs, hospital and social care, there are other costs, which aren’t always taken into consideration – such as out-of-pocket expenses borne by caregivers. These are estimated to be twice as high for those caring for people with dementia than for other caregivers.
There are also indirect costs. In the US, some 18.5 billion hours of informal care are estimated to be provided by caregivers of people with dementia each year. If they are forced to reduce their working hours, take early retirement, or are absent from work because of stress, this not only impacts their employers, but they may be less able to save for retirement, or need to dip into their savings to get by.
Even harder to measure are the emotional costs borne by caregivers, which can start to mount long-before the person they are caring for receives a formal diagnosis of dementia. During those months Freeha spent helping her father before his diagnosis, she found balancing his needs, her own, the demands of her job, and the emotional stress associated with the illness of a loved one, exhausting.
Emotionally, it was just awful.”
Although her employer was understanding, she worried about how far that understanding might extend. She felt worried about not being perceived as fully engaged, and guilty about her feelings towards her father. Today, she feels guilty about her brother and his family bearing the brunt of their father’s care.
In October 2018, Freeha’s brother, his wife, and their two children moved into the family home in Stockport, UK, to provide extra support. The demands are such that everyone must pitch in from time to time. Once, when Rana suffered a fall, it was his grandchildren who were on hand to call the ambulance. “Without any kind of formal agreement, the whole family just stepped in and stepped up and did what was necessary,” she says.
These intangible costs on families and caregivers aren’t typically covered in economic analyses of the impact of dementia. Even so, they can significantly affect people’s quality of life – with the potential wider consequences for employers and the rest of society.
The good news is that a timelier diagnosis may reduce many of these costs.
There is a fair bit of data to show that if you are proactive and get individuals and families onto a care path early on, that it’s much more likely to save money and improve quality of life,”
Hope for the future
Of course, what everyone would like to see is a cure. There are reasons to be hopeful for this, despite recent setbacks. “Every one of these molecule studies that did not work out has taught us something, and it will make the next study better and eventually we’ll get to that goal.” says Rachelle Doody, Global Head of Neurodegeneration at Roche.
Roche is currently working with several international research groups, which are using biomarkers and imaging to gain a better understanding of how the disease unfolds. Such knowledge could aid the design of better clinical trials, speeding the path to effective treatments. The company is also working with academic groups focusing on familial or inherited Alzheimer’s disease, which will enable them to test various theories about the effects of early intervention. “Alzheimer’s disease is a complex problem, and there’s no one group that’s going to solve it,” says Doody. “We have to all work together with what we’re strong on and collaborate.”
We’re trying to get to a place where we have complete solutions for people to get diagnosed, to be monitored, and to be treated.”
As for Freeha, she wants to develop digital tools that might help improve the journey for caregivers:
There is so much information out there, but there is often no clear plan; there is nothing to say: ‘this is what’s coming next, ways it could impact you and what you can do to help’.”
One thing she’d love is a checklist for the home, which would help families to better physically prepare for the future. She would also like to see the introduction of more tailored care packages, as well as routine screening for the disease, to catch it earlier when more can be done. Dementia is so often viewed as an inevitable symptom of aging, but with foresight and preparation, it can be steered towards a gentler course.