1. Dementia is a major cause of disability
There are around 55 million dementia patients globally with ca. 10 million new cases each year.1 Considering the general trend of aging populations around the world, it is estimated that dementia patient numbers will nearly triple by 2050. Even though dementia is generally associated with old age, let’s not forget that there is also young-onset dementia in people who show symptoms before the age of 65 years. These account for up to 9% of all cases. Dementia is considered the 7th leading cause of death, with women being more frequently affected than men.2
Despite dementia being widely spread, there is often a lack of understanding of this disease, “Ach, he’s just getting old.” or “Oh, she’s getting a bit dotty.” Such attitudes can result in stigmatization, and prevent proper diagnosis and care.
Dementia is a major cause of disability and dependency among older people. This is not only a challenge for them but also their caregivers. Most informal care comes from family or close friends. These loved ones, mostly women, spend about 5 hours a day looking after people living with dementia.1 This can be overwhelming physically, emotionally, and cause financial pressures. A remarkable 50% of the global cost of dementia is attributed to informal care.
2. Alzheimer’s is the most common form of dementia
What we generally call ‘dementia’ is, in fact, a group of medical conditions. With 60-70% of cases, Alzheimer’s disease is the most common form of dementia.1 Vascular dementia ranks second with about 20% of all cases.3 Dementia with Lewy bodies ranks third with 5–25% of cases.4 Other dementia types include frontotemporal dementia and Parkinson’s disease with dementia. Whilst such classification into disease types helps us talk about and manage dementia, it can be difficult for physicians to distinguish between the different types and come to a conclusive diagnosis. This is because symptoms, underlying processes in the body, and risk factors overlap.
We are developing our mobile app NEURIA to offer a curated list of experts from clinics and medical practices specializing in dementia diagnosis and treatment.
3. Alzheimer’s drugs aim to manage symptoms
Whilst the root cause of Alzheimer’s remains unknown, we do know that there is a shortage of the neurotransmitter acetylcholine, a substance used by nerve cells to communicate, and an excess of glutamate, another neurotransmitter.5 The former is commonly treated in mild to moderate Alzheimer’s stages with drugs called cholinesterase inhibitors that prevent the breakdown of the needed acetylcholine. The latter is commonly treated in moderate to advanced disease stages with so-called glutamate inhibitors that aim to counteract the effect of the surplus glutamate. Since nerve cells keep dying in the course of the disease despite such interventions, these drugs eventually stop working. In addition, patients respond differently to these treatments and there is always a trade-off between desired and undesired effects of the medication.
In June 2021 a drug called aducanumab (Biogen) gained FDA accelerated approval in the USA under the condition that more data must be provided to substantiate its benefits.6 This treatment is noteworthy because it is the first approved drug to tackle a possible cause of Alzheimer’s directly – the amyloid beta deposits, which are a hallmark of this neurodegenerative disease.
In addition, there are drugs to treat accompanying symptoms such as restlessness, listlessness, depression, aggression, sleeping disorder, or hallucinations.5 Here it is important to try and understand the cause of these symptoms. For example, pain may make a person irritable, if not aggressive, but also reduce their drive for physical activity. Pain therapy can, thus, help address such behavioral changes.
Areas of concern in pharmaceutical prescription are contra-indications and potential drug interactions. Some drugs cannot be prescribed when a patient has another disease at the same time because the mechanism of action of one drug might worsen the other condition. In addition, when drugs are administered together, the body processes them at the same time. Some drugs ‘do not agree’ because they have opposing effects on the body or for other reasons. This is also true for combinations of prescription medicines with off-the-shelf, even natural, substances. That is why a patient or carer should always inform the physician about all substances that are being taken.
4. Non-pharmaceutical treatment of Alzheimer’s is for both patient and caregiver
One of the principal goals for dementia care is the optimization of physical health, cognition, activity and well-being.1 Drugs on their own cannot cater for all of this. That is why non-pharmaceutical therapy is so important.
In general, help here comes from the disciplines of physiotherapy, ergotherapy, speech therapy, and psychotherapy.7 Whilst non-pharmaceutical approaches can be pursued at every dementia stage, it depends on the severity and the patient’s individual situation, which activities are appropriate. Therapeutic activities ideally relate closely to daily life to stimulate the patient physically and mentally in an effective manner. In addition to training and therapy, non-medical measures also include the introduction of aids that make daily life easier, which may involve modifications to the accommodation. Ultimately, these approaches are not only there to help the patient but also to relieve the caregiver. Some activities are even performed together with the caregiver.
As part of daily and therapeutic interaction with the patient, it is important to treat them with respect instead of correcting errors or ridiculing seemingly ludicrous behaviors. This strengthens self-confidence and stabilizes the mood, as it validates the person within their own world.
There is scarce scientific evidence that non-pharmaceutical methods are indeed effective, as outcomes are difficult to measure, can be very specific to the individual as well as therapist, and most research so far has focused on pharmaceutical intervention.
It has been noted that training is more effective when the patient moves physically during activities, even when those are aimed at memory or other cognitive abilities. Generally, the focus should be on enhancing the patient’s best-functioning skills to slow their decline.
Various dementia-specific activities include:
- Memory training – supports concentration, memory, mental agility
- Music therapy – singing, listening to or making music, dancing to express feelings without words
- Art therapy – creating art for example by drawing, painting, or sculpting
- Self-maintenance training – maintaining knowledge about one’s own personality
- Reality orientation training – orientation and support aids for daily life
- Reminiscence therapy – remembering one’s own past to stimulate long-term memory
- Milieu therapy – developing a daily routine and processes, adapting the living environment
- Ergotherapy – maintaining day-to-day skills like dressing, personal hygiene
- Snoezelen (body-based therapy) – using senses other than speech to calm or stimulate the patient, i.e. hearing, smell, sight, taste, touch
- Physiotherapy – maintaining strength, coordination, stamina
- Behavioral therapy – influencing behavior positively, for example to counteract depression
5. Clinical trials as a source of hope and purpose
Clinical studies can be broadly split into two categories:
- Clinical trials use interventions like drugs to modify the disease
- Observational clinical studies track the patient on their existing treatment regimen
Such studies may pursue various goals, such as:
- Improving diagnostics, that is finding new tests for diagnosing the condition
- Disease prevention
- Improving quality of life for patients, caregivers or family members
- Improving the management of symptoms
- Finding a cure
Participation in a clinical trial means that there is a chance to obtain a new drug or other treatment before most other patients. Of course, these treatments have not yet received regulatory approval and may not have the desired effects. Nevertheless, they offer the hope of obtaining treatment that is better than what is currently available on the market. In addition, they may be seen as giving some purpose to the disease – participation is a means to contribute to the future of dementia therapy.
You will be able to see active phase 2 to phase 3 clinical trials in our NEURIA app. This list will evolve continuously as active trials end and new trials are launched around the world, which is captured by our automated and manually curated search. NEURIA uses the same powerful AI-driven technology as Innoplexus’ Ontosight®. This means we are bringing technology used by pharma and biotech companies into the hands of our app users.
6. Support groups won’t leave you stranded
Dealing with Alzheimer’s in the family becomes an increasing and shifting challenge as the condition deteriorates. Whilst patients receive medical support and caregivers may find a helping hand in professional carers and mental strength in other family members and friends, this may not be enough. That is where support groups can be a saving grace.
In general, the overarching goals of support groups are to make life easier for patients and caregivers as well as advise family members. Some groups have dedicated themselves to supporting caregivers in the family specifically. Groups organise virtual and physical social activities or educational events, share information material, offer individual consultancy, some may even facilitate alternative therapy sessions or offer other hands-on support services. Donations and membership fees are important income sources. Groups also rely heavily on volunteers. Where possible, dementia support groups try to get involved in new developments that promise to benefit their membership and the wider community now or in the future such as research projects, technological developments, or collaborative events.
You will generally find that countries with a well-developed support system have one or two large dementia support groups that act as umbrella organisations with a vast network of affiliated regional sub-groups. In addition, there are smaller independent local groups across the country.
The NEURIA team has reached out to several Alzheimer’s and Parkinson’s support groups for feedback on the launch version of our app. We have had fantastically insightful conversations and are immensely grateful for the time these dedicated and busy people have given us!
NEURIA will evolve continuously. We are keen to collect as much feedback as we can so that we can try and incorporate your thoughts into upcoming app versions. Whether you are a patient, caregiver or loved one, you can help us to help you! Download the free NEURIA once it launches this fall and tell us what you think. If you are a member of a relevant support group or other association, we would love to talk to you anytime. If you feel the same, please contact us at email@example.com.
7. The color purple and a little blue flower
Purple has become the color to represent the Alzheimer’s disease movement. Some interpret it as a blend of the cool, stable blue and the hot, passionate red which both fuel the efforts of patient and caregiver supporters. You may choose to carry a purple flower in support of the movement or to signal specifically that you have lost someone dear to Alzheimer’s.
Alternatively, the little blue forget-me-not flower signifies remembrance and is seen as a supporting symbol for the dementia movement.
- https://www.who.int/news-room/fact-sheets/detail/dementia [Accessed 05/09/2021];
- https://www.who.int/news-room/fact-sheets/detail/the-top-10-causes-of-death [Accessed 05/09/2021]
- https://www.hindawi.com/journals/bmri/2014/908915/ [Accessed 05/09/2021];
- https://www.hindawi.com/journals/bn/2018/7631951/ [Accessed 05/09/2021];
https://www.deutsche-alzheimer.de/fileadmin/Alz/pdf/factsheets/infoblatt14_lewy-koerperchen-demenz_dalzg.pdf [Accessed 16/09/2021];
- https://www.deutsche-alzheimer.de/fileadmin/Alz/pdf/factsheets/infoblatt5_medikamentoese_behandlung_dalzg.pdf [Accessed 11/09/2021];
http://www.patientenleitlinien.de/Demenz/body_demenz.html#DemenzPatLL4.5.2 [Accessed 11/09/2021];
- https://www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/aducanumab-marketed-aduhelm-information [Accessed 11/09/2021];
https://www.alzforum.org/therapeutics/aduhelm [Accessed 11/09/2021];
https://www.alzheimer-forschung.de/forschung/aktuell/aducanumab/ [Accessed 11/09/2021];
- http://www.patientenleitlinien.de/Demenz/body_demenz.html#DemenzPatLL4.5.1 [Accessed 11/09/2021];
https://www.deutsche-alzheimer.de/fileadmin/Alz/pdf/factsheets/infoblatt6_nichtmedikamentoese_behandlung.pdf [Accessed 11/09/2021];