Activities of Daily Living and Associated Costs in the Most Widespread Neurodegenerative Diseases: A Systematic Review
Received 29 May 2020
Accepted for publication 4 September 2020
Published 2 October 2020 Volume 2020:15 Pages 1841—1862
Checked for plagiarism Yes
Review by Single anonymous peer review
Peer reviewer comments 2
Editor who approved publication: Dr Richard Walker
Petra Maresova,1 Jan Hruska,1 Blanka Klimova,2 Sabina Barakovic,3 Ondrej Krejcar4
1Department of Economics, Faculty of Informatics and Management, University of Hradec Kralove, Hradec Kralove 500 03, Czech Republic; 2Department of Applied Linguistics, Faculty of Informatics and Management, University of Hradec Kralove, Hradec Kralove 500 03, Czech Republic; 3Faculty of Transport and Communications, University of Sarajevo, Sarajevo 71000, Bosnia and Herzegovina; 4Center for Basic and Applied Science, Faculty of Informatics and Management, University of Hradec Kralove, Hradec Kralove 500 03, Czech Republic
Correspondence: Ondrej Krejcar
Center for Basic and Applied Science, Faculty of Informatics and Management, University of Hradec Kralove, Rokitanskeho 62/26, Hradec Kralove 500 03, Czech Republic
Tel +420 777484280
Email [email protected]
Abstract: Nowadays, the population is rapidly ageing because of increasing life expectancy and decreasing birth rates. Thus, the purpose of this systematic review is to prepare a comprehensive overview which identifies the activities of daily living (ADLs) that are gradually reduced among patients with dementia, as well as explore the therapies applied in relation to dementia and how they effectively improve the quality of life (QoL) of patients and caregivers. Furthermore, we aim to summarise the ADL activities influenced by therapies and examine the treatment costs and care for patients so that recommendations for research and development (R&D) can be made to improve both the QoL of people with dementia and cost-saving measures. The research focuses on four selected neurodegenerative diseases: Alzheimer, Parkinson, vascular dementia, and amyotrophic lateral sclerosis. Therefore, the peer-reviewed English written articles from 2014 to 2019 were searched between September 1 and December 13, 2019. Twenty-seven papers were included in the analysis. The results show that essential assistance occurs in connection with activities: eating, drinking, dressing, bathing, personal hygiene, use of the toilet, and transport. By contrast, shopping or cleaning is not addressed as much. A lower ability to take care of oneself is connected with poor patient health and higher social care costs because the patient requires care from external sources, such as home aid or nurse visits. The challenge that remains is to shift new knowledge from scientific disciplines and connect it with the needs of patients to remove legitimate barriers and increase the acceptance of new solutions by popularisation. Additionally, regarding the burden on caregivers, it would be appropriate to promote this area of education and employment so that family members can use formal caregivers, ensuring them free time and much-needed rest.
Keywords: costs, neurodegenerative diseases, quality of life, activities of daily living
Present demographic trends indicate that the population is ageing. The World Health Organization (WHO) and United Nations (UN) statistics show that the population at the age of 60+ years will increase from less than 1 million in 2020 to 2 million by 2050.1,2 The projections also show that the number of elderly individuals will be 1.5 billion by 2050, that is, twofold more than in 2020.3 Such a demographic change results in various economic and social issues, as well as an increase in ageing illnesses, such as dementia,4,5 of which there are over 50 million cases.
Dementia is a neurodegenerative disorder that usually starts with cognitive decline, that is, deterioration of memory and thinking skills. These symptoms are usually accompanied or preceded by behavioural and social changes.6 For these reasons, patients with dementia are limited to executing activities of daily living (ADLs), caring about themselves, and being fully dependent on the help of their caregivers, who are in 80% of cases their relatives.7 This impacts the patients’ lives and those of their caregivers, who are burdened mentally, socially, and economically because they often have to give up their regular jobs. On average, family caregivers spend 47 hours per week looking after their affected family members. Two thirds of these caregivers are women, and 34% of caregivers are aged 65+ years.7 Thus, the total costs of dementia include not only medications and patients’ treatment but also caregivers’ care. As the WHO (2017) states, “in 2015, the total global societal cost of dementia was estimated to be US$ 818 billion, equivalent to 1.1% of global gross domestic product (GDP)”.8
Unfortunately, governments worldwide do not fully realise the scope of the aforementioned issues. The absence of the interconnection of areas from individual research domains that seek to support a higher quality of life (QoL) for patients and caregivers, such not medical and technical research directions, and a lack of legal measures protecting the rights of patients with dementia, should be addressed to ensure relevant QoL for these target groups. Additionally, an important issue that lacks focus is the prominent economic aspect of caring for patients with dementias and in general the economic potential of older adults with dementia and their caregivers. Additionally, as discussed in Baraković et al9 to ensure the sustainable development of a society where average age is expected to continue to increase to be quite high and the number of persons struggling with dementia is respectable, society must provide a high QoL for these patients and their caregivers. To achieve these goals, aspects, and activities of everyday life for older adults and their caregivers must be investigated.
In addition to weak institutional responses to these issues, the current research and reviews related to ADLs in dementia (which are addressed in the sections below) have mostly ignored the impact of the cost and analysis of therapy on QoL improvement. More precisely, the reviewed studies have usually focused on one disease and the associated direct, indirect, and societal costs.10 Even when they have included more than one neurodegenerative disease and assessed their costs, they have not gone deeper to analyse individual therapies.11,12 Some of this research has only described individual ADLs activities connected with a particular neurodegenerative disease13 or offered methodological approaches to tackling these issues (e.g. ref. 28).
Motivated by the aforementioned literature review, this review study attempted to build on the existing reviews by focusing on all activities that require caregivers’ assistance and other related services in the context of economic burden, with the aim of improving QoL. Therefore, this systematic review has two aims in terms of improving QoL. The first aim is to prepare a comprehensive overview that identifies the ADLs activities that are gradually reduced among patients in dementia, as well as explore the therapies applied in relation to dementia and how they are effective in attempting to improve QoL. These activities can be described as ADLs because they include all the tasks for daily self-care, such as feeding, bathing, toileting, shopping, and leisure activities. Furthermore, each patient with a dementia progresses at a different rate; patients suffer from slightly different symptoms and require different help in terms of human resources, services, and medical devices. This study concentrates on four selected dementias prevalent in the central European context: Alzheimer’s disease (AD), vascular dementia (VaD), Parkinson’s disease dementia (PDD), and amyotrophic lateral sclerosis (ALS). The second aim is to summarise the ADL activities influenced by therapies and examine the treatment costs and care for patients so that recommendations for R&D can be made to improve both the QoL of people with dementia and cost-saving measures.
After a brief introduction of the topic, the paper is organised as follows: Section 2 provides the theoretical background on the basic specifications of dementia in relation to activities of everyday living, QoL in the context of everyday activities, and potential approaches to improve QoL through ADLs. Section 3 presents a detailed explanation of the search strategy, inclusion and exclusion criteria, and limitations of the review. Results are provided in Section 4, and Section 5 discusses the obtained results. Section 6 provides concludes.
This section provides information on the basic terms that we used as key search terms for detecting the most relevant research studies for this systematic review.
Basic Specifications of Dementia in Relation to Activities of Everyday Living
Dementia refers to acquired progressive impairment of memory and other cognitive functions that cause a significant reduction in social, work, and day-to-day activities. In dementia, behavioural and mood disorders (behavioural and psychological symptoms of dementia; BPSD) may occur in addition to cognitive changes. The most common are irritability, aggression or, conversely, apathy, anxiety, and depression, as well as sleep disorders, food intake, and sexual behaviour.14
Generally, the most important proven risk factors for dementia include higher age, female gender, positive family history, high blood pressure, recurrent brain traumas, genetic factors, and lower levels of education. Other risk factors may include a history of myocardial infarction, stroke and generally vascular risk factors, depression or personality disorders, and poor socioeconomic background.14
There are three stages of dementia: early (i.e. symptoms such as forgetfulness are not striking), middle (symptoms, e.g. disorientation, behavioural changes, or needing personal assistance, are becoming restricting), and late (i.e. symptoms are obvious, and patients are dependent on the help of other people).8 Several forms of the disease exist, and a person may suffer from more than one because dementias can coexist. The most frequent disease is AD, followed by vascular and lewy bodies dementia. PDD or FTD (i.e. frontotemporal degeneration or dementia) are also common, as well as mixed dementia.15 Dementia also involves diseases such as ALS, a type of dementia that does not affect cognitive functions as severely as other types. ALS is essentially a dementia type that does not include AD and instead is marked by motor neuron disease and frontotemporal breakdown.16
Within the aforementioned goal, the authors focus on the most common types of dementia, namely, AD, PDD, VaD, and ALS, that are also associated with an aged population.
As aforementioned, the most frequently diagnosed of these diseases is AD: 5% of older adults at the age of 65 years, and at the age of 85 years, half of the population. Rarely, autosomal dominant inheritance occurs in families, with AD beginning at an early age (40–50 years).17
Parkinson’s disease (PD) is one of the so-called synucleinopathies, namely, proteinopathies, which are characterised by the pathological deposition of the α-synuclein protein in neurons and glia in specific areas of the cortex and subcutaneous regions. In PD, mild-grade cognitive impairment is often observed early in the disease and may progress to dementia in up to 80% of late-stage patients.18,19 The risk of developing dementia in patients with PD is 1.7–5.9 times higher than that of the average population of the same age, education, and sex. The risk factors of PD include patient age (rather than age at onset of the disease), severity of Parkinson’s syndrome (especially akinesia and axial symptoms), low educational attainment, familial dementia, the presence of medication-induced psychotic disorder, the male gender, and according to some studies, depression.20
Vascular Dementia - Diagnostic Criteria lists the names for this type of dementia due to vascular changes, for example, arteriosclerotic dementia, multi-infarct dementia (Hachinski et al 1974), stroke, VaD, cerebrovascular dementia, ischaemic-VAD, or vascular-ischaemic dementia. VaD is a cognitive disorder caused by necrosis (heart attack) of the brain in vascular disease, including hypertension. The disease occurs at an older age and usually has a sudden onset. Impaired mental function tends to be uneven according to the areas affected by the infarction. Therefore, memory loss, impaired intellect, and focal neurological findings may occur along with good insight and judgement. There is still no agreement on its terminology, classification, and diagnostic criteria. The statistical data reveal that between 6% and 10% of individuals aged 65+ years have dementia and up to 60% of patients with AD might also have VaD.21
Lou Gehrig’s disease or ALS, namely, amyotrophic lateral sclerosis, is a fatal, progressive neurogenerative illness that impacts motor neurons by virtue of the spinal cord or brain. It results in a degradation of the brain and spine, that is, the upper and lower motoneurons or cells that effectively control and influence how muscles move. As a result, there is a gradual muscle weakness to atrophy. Eventually, there is complex paralysis of the whole body while the mind remains intact. The causes of the disease have not yet been sufficiently clarified. The incidence of this disease is approximately two people 100,000 per year, and the prevalence is more or less the same for the Western countries. The average age of ALS onset is 60 years old.
The aforementioned information on these diseases means that individuals suffering from dementia require a complex care for their psychological, social, and biomedical needs.8 For instance, they need housing adjustments to perform their ADLs or help with transport. However, most of these requests have not been addressed, and many individuals with dementia are undiagnosed.21 Additionally, one fifth of caregivers suffer from mental disorders.22
Quality of Life: The Ability to Perform Activities of Daily Living
The limitations of patients with dementia and the scope of care raise related questions on the QoL of both patients and caregivers. Clark described this as “adding life to years rather than years to life”.23 The main focus in dementia care has become to promote well-being and maintain an optimal QoL.
There are many definitions of QoL. Some studies have described it as follows:24 “A perception of one’s position in life in the context of culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns”; some as well-being.25
A state of well-being which is a composite of two components: 1) the ability to perform everyday activities which reflect physical, psychological, and social well-being, and 2) patient satisfaction with levels of functioning and the control of disease- and/or treatment-related symptoms.
Others have employed the phrase satisfaction with life.26 “QoL is the degree of need and satisfaction within the physical, psychological, social, activity, material, and structural area”. Thus, QoL can be defined in terms of a multidimensional concept and personal contentment with life.27
As per the European framework 8+1,28
QoL consists of the following eight categories: (i) material living conditions, (ii) health, (iii) education, (iv) productive and valued activities, (v) governance and basic rights, (vi) leisure and social interactions, (vii) natural and living environment, (viii) economic and physical safety, and (ix) overall experience of life.
Although QoL is related to disability, they should be distinguished.29 The most broadly adopted definition of disability is from United Nations Convention on the Rights of Persons with Disabilities (UNCRPD):
Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.30
This definition implies that people with disabilities, especially older people, experience more restrictions in ADLs then healthy people, which results in poor QoL.
A basic precondition of independent and high QoL is good health status. An important indicator of the health status of older people is the prevalence and degree of functional disability—dysaptibility—defined as an individual’s inability to exercise while performing an age-appropriate activity, and that increases with age.28 The deteriorating health of an ageing individual and advanced age can adversely affect their level of self-sufficiency to such an extent that they will no longer be able to perform the activities that provide them with their daily needs and care for themselves—they may lose their self-sufficiency. Therefore, it is crucial to assess an individual’s functional status, including an assessment of basic ADLs and instrumental activities of daily living (IADLs), mobility, cognitive abilities, sight and hearing, voiding, nutritional status, and environmental factors.
Basic ADLs (basic self-service routine activities) are common essential activities and tasks performed during the day. They include self-service tasks such as eating, drinking, dressing, washing and bathing, walking and moving, and the ability to hold urine and faeces. Testing and assessing basic daily activities helps determine the needs of the daily personal care of seniors and their long-term care plans. IADLs are activities necessary for living in an independent household and in the community, such as the ability to prepare meals, conduct purchases, conduct simpler household chores, make telephone calls, travel, use medicines, and manage finances (Table 1). Their assessment helps evaluate the type and extent of assistance necessary to ensure a senior’s independent or partially dependent life in his or her natural environment.31
Table 1 Activities of Daily Living Overview
In other words, ADLs and IADLs are measures of disability deteriorating the QoL. There is no general consensus on the evaluation of QoL. Some of the literature considers self-reporting as the most feasible option in QoL evaluation, whereas others prefer proxy reports because of their valid data.23 In case of dementia, a self-report is not possible because dementia affects cognitive abilities; thus, people with dementia are unreliable sources of information on their QoL. Therefore, many dementia-specific QoL instruments have been developed. Ettema et al identified six dementia-specific QoL measures.32 The first instrument is Dementia Care Mapping, an audit tool to evaluate the quality of care of facilities. The other instruments are based on caregiver reports: Alzheimer’s Disease Related Quality of Life and Quality of Life for Dementia. The Quality of Life in Alzheimer’s Disease (QoL-AD) relies on both patient and caregiver reports to evaluate QoL, and the Dementia Quality of Life (D-QoL) instruments depend on a patient’s self-report. In addition, the Cornell-Brown Scale for Quality of Life in Dementia was developed by modifying an instrument to evaluate negative affect. Finally, recent research studies have used the DEMQOL and DEMQOL-Proxy, which are based on self-reports and informant reports, respectively, for evaluating QoL of people with dementia.33–35 Nevertheless, further clarification and the development of dementia-specific QoL instruments are still required.32
Potential Approaches to Improve QoL in Relation to ADLs
There have been many efforts and activities to manage the decline in QoL in people with dementia, ranging from individual therapies to solving the issue of nutrition, and from physical activity to patented ICT solutions.31
Woods et al36 focused on assessing and comparing individual studies on the effect of reminiscence treatment on patients with dementia. The evaluation of the studies provided insights into the beneficial effects of reminiscence treatment on the mood, well-being, and behaviour of patients with dementia.
Another possibility to increase QoL not only for patients but for seniors is physical activity. In research studies,37 the authors have worked with the assumption that physical activity helps improve not only the physical state but also the mental state. Physical activity in people with dementia favourably affects not only mental well-being but also physical performance, cognitive abilities, and social interaction.38
Furthermore, the hypothesis on the effect of nutrition on improving the condition of people with dementia was tested. This hypothesis is not based on the assumption that food alone increases patients’ QoL, because there is no change in diet but in eating habits. The premise is that people with dementia may forget to eat because of the disease. This decrease in food intake can lead to dehydration and malnutrition and thus deterioration in overall health.39
A number of other areas can be found. ICT solutions can also help with many areas and approaches, including those aforementioned. According to Maresova et al,31 a patent database search revealed that there may be multiple solutions with respect to these diseases. To help elderly individuals suffering from chronic diseases, ICT researchers should focus on making technologies user-friendly, safe and secure, or affordable in terms of price.
As Klimova et al indicated, a combination of all the aforementioned approaches mentioned might be efficient in the delay or maintenance of cognitive disorders in older individuals.6
However, in the case of most progressive cognitive disorders, no treatment that stops or slows their progression. However, there are drug treatments that may manage the symptoms.40 For example, the same drugs used to treat AD may be used to improve the symptoms of other types of dementias.41 In addition, several dementia symptoms may be treated by using non-drug approaches, such as occupational therapy,42 and psycho-social interventions, such as cognitive stimulation therapy.43 Randomised controlled trials have demonstrated that such approaches can be beneficial in improving the cognition and QoL of people with dementia and their caregivers.44,45 Finally, caregivers’ support is crucial in dementia treatment; thus, the instruments to facilitate dialogue between caregivers and professionals with the aim of assessing their needs should be developed.46 Finally, the path to effective treatments of dementia is through increased research funding and increased participation in clinical studies.
We conducted a methodological systematic review and followed the standard Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines.47 In this review-based study, we adopted the bibliometric mapping study method48 and review technique49 based on PRISMA guidelines47 to provide a systematic, holistic review of the ADLs activities and therapies among patients with dementia and examine the treatment costs and care for patients so that recommendations for R&D could be made to improve both the QoL of people with dementia and cost-saving measures. The combination of these two methods could facilitate a deeper understanding of the topic, as well as enable the production of an intellectual mapping structure.48
We included all reports describing ADLs, therapies, and related costs related to AD, PD, VaD, and ALS and the different stages and types of these diseases. We conducted a review of articles published since 2014 (i.e. when ‘The Glasgow Declaration 2014ʹ was launched).50 The Glasgow Declaration calls for the creation of a European Dementia Strategy and national strategies in every country in Europe. The signatories also call on world leaders to recognise dementia as a public health priority and develop a global action plan on dementia. We restricted inclusion to the English language. A detailed description of the exclusion and inclusion criteria is as follows:
- Published from 2014 to 2019—inclusive.
- English-written peer-reviewed full-text articles.
- Focused on costs associated with the treatment of selected neurodegenerative diseases (AD, PD, VaD, ALS).
- Studies that described direct and indirect costs.
- The objective was to explore the present state of the day-to-day activities related to the selected diseases (ADLs and IADLs).
- The purpose was to reveal the present state of the costs and economic burden related to the selected diseases.
- Focused on AD, PD, VaD, and ALS and the different stages and types of these diseases.
- Described the used therapies in long-term care for people with dementia.
- A language other than English.
- Main focus of the article was on neurodegenerative disease other than AD, PD, VaD, or ALS
- Reviewed studies, meta-analyses, purely descriptive articles, or conference notes.
- Articles with non-related health topics and those that considered the technology used, for example, in drug development or testing new drugs.
- Article focused on trial, CUA, COI studies.
- Papers without an abstract or only the abstract was available.
- Articles on medical devices.
- Aimed at the manufacturing of technological results.
- Analysed the behaviour of caregivers, psychological aspects of informal care, or home care.
- Focused only on health care.
Information Sources and Search Strategy
The literature review was performed from 1 September 2019 to 13 December 2019 for peer-reviewed, published research studies in English. Two researchers independently reviewed titles and abstracts and reviewed full articles. The studies had to be indexed in WoS and MEDLINE. The search included “Alzheimer”, “Parkinson”, “Vascular dementia”, “Amyotrophic lateral sclerosis”, “Long-term care”, and “Activity of daily living” from 2014 to 2019 (Table 2). We received 1378 publications; 151 publications were removed due to duplicates and articles written in languages other than English. By filtering out inappropriate publications by keywords and title, we removed 778 publications from the selection. The steps used are as follows:
- Deletion of publications after abstract reading such that 344 publications were removed after reading the abstract
- Examined the entire text of 122 publications
- Removed 24 publications for non-reporting of patient activities
- Removed 19 publications from selection for non-treatment costs
- Removed 35 publications with a main focus other than treatment, cost, and day-to-day activities
- Of the 1378 publications from Step 1, 27 remained to be analysed (Figure 1).
Table 2 Distribution of Examined Articles
The general procedure is illustrated in Figure 2.
Figure 1 Process of filtering articles.
To identify the key variable and important keywords in this research area, cluster analysis was performed (Figure 2).
The purpose of the cluster analysis was to identify associations among the main keywords in the selected articles and find correlations and dependencies inside smaller groups of keywords—clusters. The results point to key variables observed across dementia. These are grouped as health care cost-related keywords in two clusters represented by the main keyword, namely, care, costs, caregivers, mortality, prevalence, coloured by red and orange (Figure 2). The next cluster is related to the main keyword—dementia—which is connected to donepezil as the main medicament and also to efficiency (using the medicament), or, for example, cholinesterase-inhibitor as the component of medicaments where chemical research is in progress. The green cluster represents diagnostics of dementia, such as guidelines, biomarkers, PET, mild cognitive impairment, and criteria. The yellow cluster is related to people and is on the border between dementia diseases and specific disease—PD. This cluster is specific for the orientation in cognitive functions (keyword cognition), exercise, balance, walking, and falls, connected to older adults, and ageing. The last cluster is blue—managing Parkinson disease—with QoL, decision-making, progression, and modelling, and a medical therapy (e.g. deep brain stimulation).
These clusters and structures are not new and have been used in many articles on this topic. Additional information can be found by analysing the turquoise cluster, which is unfortunately spread over almost all the parts of the cluster. The keywords grouped in this cluster are QoL, progression, accuracy, or epidemiology. These are critical key keywords to model QoL, progression, cost-effectiveness, and prevalence. In relation to the aim of the article and related to our cluster analysis, the results of the variables in Table 3 were then selected for the basic characteristics.
Figure 2 Cluster analysis of selected articles for research.
Table 3 Citation Amount of Selected Articles
The graphical representation of the linked keyword groups also helped with the initial search and selection of the keywords.
The authors considered it essential to evaluate the included results also from the perspective of citation response. Because of this criterion, four publications before 2014 were also included, which were found by examining the references in the publications obtained by searching. Several publications fulfilled the research goal, had a high citation response, and their results were therefore considered in the analysis (Table 3).
From the articles in Table 3, four were also included in the results because they were often referred to in our selected relevant articles; these are
- Determinants of costs of care for patients with Alzheimer’s disease. (L. Jönsson et al, 2006)’56
- “Net costs of dementia by disease stage: Net costs of dementia by disease stage. (Leicht et al, 2011)”57
- Predictors of costs of care in Alzheimer’s disease: A multinational sample of 1222 patients. (Gustavsson, Brinck, et al, 2011)’58
- “Cost and Care of Patients with Alzheimer”s Disease: Clinical Predictors in German Health Care Settings. (Reese et al, 2011)’59
Finally, our systematic research included 27 studies on the basis of the extent of a patient’s need for assistance in ADLs who had one or more of the four main neurodegenerative diseases in old age: AS, PDD, VaD, and ALS. The focus of the studies was divided into two main areas so that it could correspond to the specification of the goal of this study. We thus provided a comprehensive overview that identified the ADLs activities that are gradually reduced among patients with dementia, as well as explored the therapies applied in relation to dementia. This corresponds to Table 4, where the results are divided according to the four dementias. The information on the number of patients studied and the type of intervention is also provided. The authors of this review also attempted to propose recommendations for R&D that could improve the QoL of people with dementia, important for cost-saving measures. Table 5 provides up-to-date information on prices related to comprehensive and long-term care for people with dementia, namely, direct and indirect costs and their individual items, which are listed there. Therefore, for the reader to obtain information on the costs in context, the number of patients within which the data were collected and the primary purpose of the study have also been provided.
Table 4 Summary of Selected Studies Related to Types of Therapy and Its Effectiveness for People with Dementia
Table 5 Summary of Selected Studies in Relation to Monitoring the Economic Burden in the Context of Chosen Dementia
In most cases, the necessary follow-up treatment and care are related to the degree of the disease and in relation to the necessary costs; in the latter case, it is a detailed specification of ADLs or IADLs with which patients need help, and it is examined whether a specific type of therapy will help improve their QoL.
Of the 27 selected articles, seven were on PD, 13 were on AD, and the remaining seven were combinations of various neurodegenerative diseases. Eleven studies primarily focused on costs.22,56–66 These articles focused on ADLs, iADLs, and QoL.61,64,67–75 In addition, five studies focused on one country.59,61,62,65,67 The subject sample size varied greatly across articles. In some articles, the research sample was 19 patients, and in others, the sample was 18,745 patients with different types of neurodegenerative disease. Most frequently, however, the sample was approximately a few hundred patients. The most common methods used by the authors were a questionnaire survey; a subsequent economic evaluation; and statistical data processing by correlation, chi-square, or Mann–Whitney test.
Table 5 shows the results related to costs. In many cases, the focus was the so-called societal perspective in monitoring the economic burden. In the societal perspective, the analysis considered all costs and impacts that resulted from the intervention.76 This is important for a societal perspective when making ideal decisions.77 In practice, however, the definition of the societal perspective is not so clear. In particular, it is not obvious what costs or expenses need to be involved further in the cost of health care.78,79
For example, Leicht and Gertrud explored indirect and direct costs, whereas Gertrud classified costs that were more direct in nature—outpatient consultation, diagnostics, drugs, other health care services, non-medical costs (transport, care classified as informal)—and these were calculated by using the opportunity method or proxy method. In the calculation of indirect costs, the human capital approach method was used. €6030.2 (SD = 6163.0)/patient/year was the total mean cost, whereas direct medical expenses accounted for 35.7%, direct non-medical expenses were 29.4%, and indirect costs were 34.9%.57 Stated that the severity of a disease does not affect the costs of medical care. However, most of the research studies have revealed that total costs include 75% of the costs of care because care is usually performed by informal caregivers, usually family members. Thus, the care received at home becomes an additional portion of the total costs. Costs for patients living in a community were linked at the level of their impairment.
In terms of economic burden, the highest annual cost per patient was recorded in Leicht et al57 on the other hand, low in.65 These results differed in the purpose of the study and thus the inclusion of cost groups. Other factors were the price level of the country or the method of the calculation of indirect costs. There has been a consensus that a high proportion of costs are incurred by non-formal care. There have also been significant differences in calculations, due to the expression of costs through lost wages. In monitoring the cost of patients in relation to the types of dementia, the results show no significant differences, that is, in the results of cost range margins22,56,57,60–62,65 can be compared or the differences in the selected variables studied in the detected studies that examined multiple types of dementia and compared values.22,62,69,72
For the aforementioned costs, there is a division into formal and informal care, which often overlaps with an approach of direct and indirect costs. In any case, a group of medical costs where medications, hospitalisations and outpatient visits belong forms a smaller share of the whole. Social care (such as community care services, structural adaptations) accounts for a larger share of direct costs. In informal care, costs are often calculated using what the family member loses by spending time on the patient. The main indirect cost losses include lost productivity, absenteeism, the need for part-time work, and the creation of savings.57,59,61,62,64,71,74,75,80 The authors agree that the more severe the patient’s condition, the cost of treatment and care increases exponentially, and any additional activity that the patient is unable to perform alone.58,64,65,71 For instance, for AD’s disease, the total social cost is on average 1,984 euros. For the mild phase, € 1.355, for the moderate severity, € 1.884 per month, and for the severe phase, € 2.908 per month.64
Notably, the information on the amount of care costs, what activities patients require, and how high the level of high care are also important. Another part of the studies examined (Table 4) points out the specific activities/tasks that people with dementia need to cope with. Out of the total number of results found, nine studies focus on these tasks and on whether a certain type of therapy will positively influence patients’ independence. Agnieszka Gorecka showed that DBS or deep brain stimulation, when applied to the STN (subthalamic nucleus) could result in a decrease of motor issues for those suffering from PD, and can further augment their HRQoL. In addition, their findings indicate that their patients considerably improved after three months ADLs and HRQoL, and with time these benefits only grew.
Clarissa et al72 investigated which tasks are affected at each phase of dementia and how much this is linked with differences in QoL across the various phases of this disease. They found out that toileting, transfer, and feeding are not affected in the moderate stage of dementia. It might be argued that activities, for example, feeding, depend mainly on physical feedback. Although physical feelings might work as a cue for conducting every ADLs, bathing, dressing, and continence worsen in the initial phases of dementia. Thus, the extent to which ADLs depend on physical feedback can differ. The authors also confirm that cognitive functioning is not connected with PwD-based QoL ratings.
Barbe et al70 revealed that functional scope, as assessed by the IADLs and ADLs scales, independently affects HRQoL among people with AD. For instance, enhanced HRQoL was associated with patients‘ being able to move around on their own or being able to telephone. By contrast, meal delivery was associated negatively with HRQoL. Nevertheless, meal delivery also caused a positive impact on the HRQoL of the patients in question, especially in terms of the social area substituting their feelings of loneliness. The authors also confirmed that patients who could not go shopping, travel, or perform treatment for themselves on their own, had no experience of a negative impact when it came to their HRQoL. The variations commonly found in older subjects do not hold the same level of stigma when looking at people with AD.
The main findings in relation to certain therapies and patient groups are provided in Table 4.
The results show that the performance of individual ADLs worsens differently in each stage of dementia, which is significant knowledge for enhancing patient’s QoL in each phase of disease.67 Regarding the activities that require the aforementioned high cost of care, there is a clear need for assistance in the following areas: eating, drinking, dressing, bathing, personal hygiene, toilet, and transport (Table 4). Among the activities that patients can manage relatively alone, or have not been investigated in the detected studies, are taking medications and bed and chair movements.
In the context of the first aim of this review, that is, identification of ADLs activities that are gradually reduced among patients with dementias, the obtained results show that essential assistance occurs in connection with the following activities, which can be characterised by the most important ones in ADLs in the dementias context: eating and drinking (70%), dressing (48%), bathing and personal hygiene (59%), use of toilet (51%), and transport (74%). By contrast, shopping or cleaning are not addressed as much. Primarily, this is influenced by the focus of the research, which includes people with higher degrees of dementia, where this issue is almost no longer relevant. This act is automatically associated with visits and staff.
Regarding the effectiveness of therapies applied in relation to dementia and in what how they are effective in attempting to improve QoL, we conclude that this area of research requires further investigations to make a meaningful—not misleading—conclusions. This is a consequence of QoL being a multidimensional and complex construct of various impacts and interplays (Section 2).
In terms of the second aim of the paper, that is, examination of costs related to treatment and caregiving, The obtained results show that the research covers both direct (e.g. medical and hospital costs, treatment, accommodations) and indirect costs (e.g. loss of production or leisure time, home care, loss of income). The highest costs are the informal costs, calculating the lost salary of the informal caregiver, based on the time burden, which is often 24 hours a day. Even in a situation where one addresses the senior, that is, these items are not quantified, research has proved that care undesirably affects the QoL and health and thus indirectly augments health costs again.
Although the research findings concerning the costs of care which is informal in nature can vary across the countries, on average, these costs are one third of total costs. They are higher, for example, in the United States than in Western Europe. By contrast, Western Europe has higher costs in comparison with central European countries, such as Hungary. For instance, a Swedish study by60 estimated the costs of informal care between 30% and 60%. A Danish study by22 reported that 60% of costs is attributed to the cost of informal care, and study by69 showed that informal care’s costs contributed to 43% of direct costs. Furthermore, a study by60 claimed that ADLs are the key forecasters of societal costs and therefore should be a key aspect in the economic evaluation of the given therapies. Notably, these therapies (e.g. occupational therapy, reminiscence therapy, or deep brain stimulation) seem to have a beneficial effect on the performance of ADLs.68,74,80 Deep brain stimulation therapy appeared to have an additional effect on emotional well-being, social support, and cognition,74 and the reminiscence therapy had an important positive impact on communication, socialisation, and restlessness,68 a factor also crucial for general well-being. Moreover, the therapies should focus on initiative of activities, not only on their performance. It is important to maintain ADLs abilities because they help delay long-term institutionalised care, which is very costly. Another factor that plays a significant role in institutionalisation is the caregiver factor. That is, having a spouse caregiver can delay a patient´s institutionalisation by at least 2.5 years.66 As the findings of a German study59 reveal, the annual costs in total were on average €25,500 for individuals residing in longer-term care institutes and €7,450 for those at home. Generally, dementia is an expensive neurological disorder. Leicht et al57 explained that net costs usually become twice what they should be when the state goes from mild to severe, because of the increasing dependence on nursing care. Therefore, as Jones et al63 reported, if the increase in costs and caregiver outcomes prove to be causally associated with disease progression as it was in their study, intervention therapies will be of high importance and cost-effective for individuals in the mild stage. Similar findings were also confirmed by Joling,22 who reported that the therapies especially targeted at the reduction of patients´ IADLs and ADLs dependencies may basically lead to useful socioeconomic benefits. Moreover, Reed et al64 identified four distinct ADLs subdomains which have an important impact on costs and caregiver outcomes in AD. These include basic activities (washing, getting dressed, or making tea or coffee), basic household chores, communicating, and outdoor activities. Thus, a lower ability to take care of oneself is connected with poor patient health and higher costs of social care because the patient requires care that can only be provided by external sources, such as house-helpers or nurses who visit the patient.
Thus, to optimise the costs of the overall costs of neurological disorders, such as AD or PD, attention should be paid to the relevant therapies with a proven positive impact on both the initiative and performance of ADLs in individuals presenting with mild and moderate stages of dementias. In addition, people with dementia should be provided with a tailored-made personal programme for care, which should be based on objective evaluations of all the functional factors influencing them.70
Furthermore, one holistic solution that may contribute to a decline in care costs, as well as to the improvement of QoL of older adults with dementias and their caregivers, be it nurses or family members, is the solution based on technology, as proposed by Baraković et al.9 Indisputably, those technology solutions must be developed in cooperation with the ultimate users to satisfy their needs because putting the products on the marketplace without being validated by the users is not a meaningful utilisation of the R&D community. It is necessary to develop standards for older generation groups to improve their QoL. Furthermore, it is necessary to validate and verify approaches to demonstrate the consistency and long-term scope of all such health-related technology solutions.
Other challenges that must often be overcome in this context are the legislative barriers, reluctance of people to use technology, or insufficient adaptation of solutions to the needs and abilities of seniors. Ambient Assistive Living technologies81 and Smart Home systems82 are considered beneficial technologies that aid people suffering from the illness and their caregivers. Control is conducted by passive and active IR motion sensors,83 which seems to be an appropriate solution to extend the time of independent living among older people. New approaches involving machine learning generated favourable outcomes.84
At this point, how and where the presence of a person is irreplaceable needs to be determined; if such things are identified, these solutions might in part of completely reduce the duties of caregivers. All this should be solved to address augmenting QoL for patients and their caregivers. As aforementioned, ADLs ability, especially in basic areas such as getting dressed or washing, is the main predictor of societal costs of care,60 out of which informal care represents the largest share of total societal costs in terms of those with mild to moderate levels of disease.58,85 This approach also coincides with that provided by Maresova et al, in terms of the need to consider different aspects of well-being in the context of healthy ageing enhanced by personalised ICT solutions.31
One notable trend that we observed was an ageing population, which is contributed to a lower birth rate births and increased life expectancy. When the number of older adults increases, the risk of dementia increases. Ill individuals are limited in their ability to execute ADL care for themselves, and they are fully dependent on the help of others. This leads to an increase in the number of caregivers required—professional or family members— for everyday tasks. Caregiving and treatment aimed at improving the QoL of affected individuals assume certain costs—direct and indirect.
All the aforementioned information in this paper indicate the need to examine the current state of research regarding the activities that are gradually reduced among patients in dementia, as well as explore the therapies applied in relation to dementia and how they are effective in attempting to improve QoL. Additionally, this provoked the need to summarise the ADLs activities influenced by therapies and examine the treatment costs and care for patients so that recommendations for R&D could be made to improve both the QoL of people with dementia and cost-saving measures. Therefore, this paper makes several contributions to the research in this field.
First, compared with the literature, this paper contributes by addressing the reduced ADLs activities in dementia patients in combination with the cost impact and a focus on the improvement of the QoL for affected individuals and their caregivers. Second, we identified the ADLs activities that are gradually reduced in patients with dementias as follows: eating and drinking, dressing, bathing and personal hygiene, use of the toilet, and transport. Third, we identified the need for further research studies to address the impact of current treatments and therapies on the overall QoL of affected individuals.
Moreover, regarding the costs related to caregiving and treatment related to patients with dementia diseases, we conclude that neither the institutional nor the research and scientific approaches fully realise the scope of the problem or provide predictive models. The great identified challenge is that related costs are mostly informal and they vastly degrade the QoL of caregivers, affecting the quality of care and life of patients. Therefore, our recommendation for institutions and the research community is to find ways to adequately value the efforts input into the care and treatment of ill individuals, through strategies and policies and their proper mapping and placement in the real environment.
Finally, to achieve the ultimate goal, that is, to improve the QoL of patients with dementias and their caregivers, we propose relying on technology solutions that recognise the reality of these individuals. In other words, the proposed solutions need to ensure the highest possible levels of independent participation of affected individuals in everyday life, ease the burden caregivers, and produce cost-savings. The clear identification of selected ADLs for older adults with dementia problems, which are essential in patient care and not currently addressed other than by personal care, is a space for researchers across disciplines. A goal to focus on whether it is a breakthrough in the field of therapies, modern technologies, technical solutions, or the development of the interconnection of solutions across disciplines.
AD, Alzheimer’s disease; ADLs, activities of daily living; ADCS-ADLs, Alzheimer’s Disease Cooperative Study - Activities of Daily Living; ALS, amyotrophic lateral sclerosis; BPSD, behavioural and psychological symptoms of dementia; BADLs, basic activities of daily living; CDR, clinical dementia rating; CSDD, Cornell Scale for Depression in Dementia; CRPD, Convention on the Rights of Persons with Disabilities; CTT, classical test theory; DBS, deep brain stimulation; DQoL, dementia quality of life; EF, executive functioning; FAME, The Family Association for Mental Health Everywhere; FTD, frontotemporal dementia/degeneration; GDP, gross domestic product; GDS, global distribution system; GERAS, prospective, multicentre, non-interventional cohort study in France, Germany and the UK; HRQoL, health-related quality of life; ChCI, Charlson Comorbidity Index; IADLs, instrumental activities of daily living; MMSE, Mini-Mental State Examination; NMB, net monetary benefit; NPI, national provider identifier; NPI-Q, Neuropsychiatric Inventory Questionnaire; OTDL-R, observed tasks of daily living; PD, Parkinson’s disease; PDD, Parkinson’s disease dementia; PwD, people with dementia; QALY, quality-adjusted life-year; QoL, quality of life; QoL-AD, quality of life in Alzheimer’s disease; R&D, research and development; RMT, Rasch measurement theory; RUD, resource utilisation in dementia; STN, subthalamic nucleus; UN, United Nations; UPDRS, Unified PD Rating Scale; VaD, vascular dementia; WHO, World Health Organization; ZBI, Zarit Burden Interview.
This work is also partially supported by the project IT4Neuro (degeneration), reg. nr. CZ.02.1.01/0.0/0.0/18_069/0010054 and by the project of Grant Agency of Excellence, University of Hradec Kralove, Faculty of Informatics and Management, Czech Republic (under ID: UHK-FIM-GE-2020). The authors would like also to acknowledge research laboratory Little Mama Labs, Sarajevo, Bosnia and Herzegovina. We are also grateful for the support of professor Jasmina Baraković Husić in consultation regarding QoL aspects.
The authors report no conflicts of interest for this work.
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