Alzheimer's disease is already one of the most debilitating illnesses for patients and their families as well as for society as a whole. According to analyses carried out by PEX PharmaSeqence most of the costs associated with Alzheimer's disease is borne by the patients' families. The expenses associated with the disease in the coming years will increase in proportion to tempa of an ageing population, and the number of patients in The number could double in the next 30 years. The growing phenomenon of "silver tsunami" will result in an increasingly conditions, the incidence of which increases with age, are becoming a greater problem, posing new challenges for the Polish health care system. Among these, one of the biggest challenges will be dementia diseases, among them reply tocand for 50-70% cases these diseases, Alzheimer's disease.
- According to estimates, as many as 580,000 people, and Projections predict that the number of senior citizens with dementia caused by Alzheimer's disease could double in our country and to reach over 1.2 million people in 2050.
- Patients are diagnosed late, usually in advanced stages. It is estimated that the disease in the first clinical stage is correctly diagnosed in only about 20% Delayed or no diagnosis will deprive the patient of access to treatment to slow the course of the disease once such therapies are available in Poland.
- The total annual direct and indirect costs of Alzheimer's disease for Poland are more than PLN 11 billion. In these costs 5.4 billion in medical and non-medical costs for patients and their carers and PLN 5.7 billion total indirect costs related to the lost productivity of patients and the lost income of their carers.
ALZHEIMER'S DISEASE IS A DISEASE THAT AFFECTS THE WHOLE FAMILY. ON AVERAGE, ONE SICK PATIENT BURDENS THE DISEASE 2 RELATED FAMILIES. In Poland, about 92 per cent of people with Alzheimer's disease are cared for by their family. In about 44 per cent of families, care is provided solely by one family member and in 26 per cent by two relatives. The duty of caring for the patient falls mainly on the daughters. In Poland, the patient's carer is most often a person aged between 50 and 60, i.e. still economically active, who at some point has to give up work because of caring for a loved one with Alzheimer's disease. This has a direct impact on the economic situation of the family.
It is the families of patients and their carers who suffer the most from the effects of the disease - both from partial or total exclusion from professional and social life, psychological and physical burdens, and the stigma that often affects both the patient and their relatives. For medical purposes, mainly medicines and specialised hygiene items, patients and their caregivers spend from PLN 1,000 to more than PLN 2,500 in three months. This means that, on average, up to one in three pensions is spent solely on meeting the patient's health needs[1].
The social costs and economic burden are enormous. The total annual direct and indirect costs incurred by Alzheimer's disease arę more than 11 billion. This amount consists of medical and non-medical costs incurred by patients and their caregivers, which amount to almost 5.4 billion, as well as indirect costs incurred due to lost productivity of patients and lost income of their caregivers, which total 5.7 billion.
"W the report we presented today we have attempted to estimate the cost of care borne by Polish patients and their carers and the impact of the disease on the economy. These issues are important because previous analyses of the costs of the disease have been narrowed down to the perspective of the burden of only expenditure from public funds. Narrowing the economic perspective to medical costs alone is an important reason for the occupation of the choroAlzheimer's disease a distant priority Polish health care system. Given the growing scale of the problem, this should change". - he points out Tomasz Kiełczewski, MD PEX PharmaSequence Consulting Director author of the report.
The cost of patient care and the burden on carers increases as the disease progresses. At the beginning of the disease, the patient requires little assistance. Over time, he or she gradually becomes less independent, until finally requiring round-the-clock care. The problem is caregiver fatigue and burnout, which is caused by limited access to day and 24-hour care facilities, hospices, and insufficient numbers of trained medical and caregiving staff - considers Zbigniew Tomczak, Chairman of the Board of the Polish Association for Persons with Alzheimer's Diseasewho cares for his wife who suffers from alzheimer's disease.
The situation for carers of patients in Poland differs significantly from that in many European countries. Limited financial possibilities mean that few families can afford the care facilities for Alzheimer's patients offered to their relatives. There is little therapeutic or social support from the state. This is compounded by cultural considerations - we are reluctant to place a family member in the care of a nursing home.
The carer of a person with Alzheimer's disease feels the psychological strain as soon as the first symptoms appear in the client, often before the diagnosis is made. The person with the illness becomes unsympathetic, demanding, suspicious, sometimes agitated, and sometimes aggressive or withdrawn. He or she can be distressing to loved ones. All this puts the carer under constant stress. He cannot predict how the patient will behave. He or she feels that he or she cannot cope with caring for the sick person alone. Chronic stress promotes cardiovascular disease, obesity, mental illness, mainly leads to mood and anxiety disorders, reduces resistance to infections. The carer is also physically exhausted. This is because he or she is taking care of a person who may need help with dressing, eating, daily toileting, and many patients are not cooperative and resist doing these activities.
Alzheimer's disease, is characterised by progressive impairment of memory and other cognitive functions, leading to irreversible intellectual and physical degradation after several years of duration. Only in the early stages of the disease can patients function, at least partially, independently; over time, they require the increasing involvement of others in daily support and care. Currently, treatment of Alzheimer's disease consists of symptomatic medication and various forms of therapy to support the patient and carer. Recently, the first drug with a causal effect was registered in the US - indicates Prof. Dr. Agnieszka Słowik, national consultant in neurology, Head of the Department of Neurology, Jagiellonian University Collegium Medicum.
THE TIMING OF DIAGNOSIS IS OF FUNDAMENTAL IMPORTANCE. As many as 80 per cent of patients with Alzheimer's disease are undiagnosed, which means in practice that they receive no treatment or have no chance of benefiting from therapies that slow down the course of the disease. It is therefore essential to develop and implement a screening system that would allow early detection of the disease and early treatment. Delayed or no diagnosis will deprive the patient of access to treatment to slow the course of the disease once such therapies are available in Poland.
Time is not an ally of the disease. In Poland, on average, it takes 24 months from the time a patient reports to a PCP until the diagnosis of Alzheimer's disease. This is one of the worst results in Europe.
Meanwhile, improved early diagnosis and rapid implementation of pharmacotherapy would help to extend the patient's independent functioning time by an average of two years and reduce the number of people in the most severe stages of dementia.
– Early diagnosis and treatment have a huge positive impact on the course of the disease and better health outcomes and cost rationalisation. Investment in research and improved care for patients with neurological diseases will not only increase life expectancy and reduce suffering, but will also result in significant savings for health and social care systems. Consideration of the significant social costs of Alzheimer's disease should be part of decision-making processes for public funding and pricing of health interventions -. highlights Dr Małgorzata Gałązka-Sobotka, Dean of the Centre for Postgraduate Education, Director of the Institute of Healthcare Management and the Centre of Value Based Healthcare, Lazarski University.
There is a lack of systemic solutions to meet the needs of people with Alzheimer's disease, and the healthcare system treats this group of patients with treatment standards that apply to older people in general.
- Demographic data in many countries clearly indicate that the overall number of people living with dementia will continue to increase significantly. If these projections prove accurate, the number of people requiring treatment, care and support could double by 2050. Alzheimer's organisations have for years been drawing attention to the growing population of older people in Europe, including those with dementia. They also highlight the nature of the problem of an ageing population. As a result, health and social care systems will require a significant investment in services and societies will have to adapt to living/coexisting with patients with dementia in their environment. This requires, among other things, a change in the way we think about the disease, emphasises Dr Edyta Ekwinska, Vice President of Alzheimer Poland.
A recent report on Alzheimer's disease shows that the majority of GPs do not carry out a cognitive screening of patients in their senior years. This is the reason for such a low level of Alzheimer's disease detection in Poland. In Poland, only 20 per cent of patients are diagnosed with the disease, compared with 45 per cent of patients worldwide.
- Even at the GP stage, it is necessary to increase vigilance for early symptoms and refer the patient to a specialist clinic to verify the diagnosis. Meanwhile, data from the National Health Service (NHF) shows that in 2019, only 236,300 patients with a diagnosis of Alzheimer's disease and other related diseases benefited from care financed by the public payer. The majority of patients with a minimum of one publicly-funded service were cared for by a GP only and did not receive outpatient or hospital-based specialist care. In 2019, the largest number of patients, more than 62 per cent, received primary care, less than 16 per cent of patients had AOS specialist consultations, and about 14 per cent received psychiatric consultations. - recalls Dr Małgorzata Gałązka-Sobotka.
The introduction of screening tests - the clock test and the mental status assessment scale - is essential, and biomarkers and genetic tests are used for the pre-symptomatic detection of the disease. Brain imaging techniques, on the other hand, can identify the presence of protein deposits correlating with memory loss. - Given that brain damage begins to occur long before the first symptoms of the disease appear, more frequent use of these methods will allow rapid identification of patients affected by Alzheimer's disease. It will also make it possible to halt or significantly slow down the course of the disease in these patients - considers Prof. Konrad Rejdak, MD, PhD, President of the Polish Neurological Society.
According to Zbigniew Tomczak, it is necessary not only to increase accessibility to diagnostic screening tests and treatment, but also to deepen and disseminate medical and preventive expertise, introduce standardisation of tests, professionalise care, rationalise costs and ensure stability of services. - The Ministry of Health and the Ministry of Family and Social Policy should create a unified system in order to reduce both the incidence of Alzheimer's and the rate of increase of sufferers - underlines Zbigniew Tomczak.
As our population ages, patients with Alzheimer's disease will increase. Today, there are about 584 000 people living with the condition in Poland, and according to forecasts, this number could double in the next 30 years. - In 2050, the number of Alzheimer's patients in Poland will be more than 1.2 million - considers Prof. Dr. med. Agnieszka Slowik.
*Expert quotes and data are from the PEX PharmaSequence Report 'Alzheimer's Disease. Challenge Health and economic burden in ageinghe evolving society'.
The full report is available at: https://www.pexps.pl/publikacje.html
WHAT WE KNOW TODAY ABOUT ALZHEIMER'S DISEASE?
Alzheimer's disease is a neurodegenerative disease that leads to dementia. It is mainly suffered by people over 65 years of age and usually lasts 8-20 years. Every three seconds, someone in the world develops Alzheimer's disease or another form of dementia. These diseases are now among the top ten causes of death worldwide.
During the course of the disease, abnormal deposits of β-amyloid and excessive phosphorylation of tau protein are deposited, and pathological abnormalities appear approximately 10-20 years before the visible symptoms of cognitive impairment. As the disease progresses, cognitive impairment progresses and dementia increases, preventing the patient from functioning independently. The affected person requires third-party support, which increases with time and disease progression. A patient in an advanced state already needs virtually round-the-clock care.
The pathogenesis of Alzheimer's disease has not yet been clearly defined. However, it is known that environmental and genetic factors play a major role in the development of the disease. These include level of education (longer periods of schooling result in later onset of clinical symptoms), cardiovascular disease, family history of Alzheimer's disease, living alone and lack of social contact and head trauma.
Many Alzheimer's patients already need round-the-clock care. Modern therapies can halt the progression of the disease. They can help the patient to remain functional and independent, but this will only happen if treatment is started at an early stage of the disease. Therefore, changes in the healthcare system are needed to ensure that patients are diagnosed early, before the symptoms of the disease appear. In Poland, it takes an average of 24 months from the time a patient reports to a primary care doctor until they are diagnosed with Alzheimer's disease. Meanwhile, rapid implementation of pharmacotherapy would allow, on average, a two-year prolongation of the patient's time of independent functioning and reduce the number of people in the most severe stages of dementia. Changes should also be made to the organisation of Alzheimer's care, which would relieve the burden on patients' carers.
[1] According to CSO data for 2020, the average gross monthly pension from the non-agricultural social security system was PLN 2 455.07 (CSO report 'Pensions in 2020').