LITHUANIAN UNIVERSITY OF HEALTH SCIENCES MEDICAL ACADEMY
FACULTY OF NURSING
INGRIDA PETRAUSKAITĖ
EVALUATION OF QUALITY OF LIFE FACTORS AND DAILY LIVING ACTIVITIES FOR PEOPLE WITH DEMENTIA IN NORWEGIAN AND
LITHUANIAN NURSING HOME
Master study program “Physical medicine and rehabilitation” finalwork
Research supervisor
PhD DaivaPetruševičienė
LITHUANIAN UNIVERSITY OF HEALTH SCIENCES MEDICAL ACADEMY
FACULTY OF NURSING
APPROVED: Dean of Nursing faculty Prof. JūratėMacijauskienė ________________ ---
EVALUATION OF QUALITY OF LIFE FACTORS AND DAILY LIVING ACTIVITIES FOR PEOPLE WITH DEMENTIA IN NORWEGIAN AND
LITHUANIAN NURSING HOME
Master study program “Physical medicine and rehabilitation” finalwork
Research supervisor PhD DaivaPetruševičienė --- Reviewer --- --- Work accomplished by Master student Ingrida Petrauskaitė KAUNAS, 2016
SUMMARY ... 4
SANTRAUKA ... 6
GLOSSARY OF KEYWORDS ... 11
INTRODUCTION ... 11
THE AIM OF THE RESEACH ... 13
OBJECTIVES OF THE RESEARCH ... 13
LITERATURE REVIEW ... 14
QOL for dementia people who live in nursing home ... 14
QOL in dementia ... 15
QOL indicators: ... 15
Leisure and social interactions ... 18
MATERIAL AND METHODS ... 20
PARTICIPANTS ... 20
METHODS: ... 23
PROCEDUREOFTESTING ... 24
RESULTS AND DISCUSSION ... 27
QOL factors ... 27
Overall QoL experience of life ... 38
KATZINDEXOFINDEPENDENCEOFDAILYLIVING ... 39
CONCLUSION ... 40
PRACTICAL RECOMENDATION ... 42
LITERATURE LIST ... 43
APENDEX ... 53
SUMMARY
Petrauskaite I. Evaluation of quality of life factors and daily living activities for people with dementia in Norwegian and Lithuanian nursing home/ final work of master studies research supervisor PhD DaivaPetruševičienė. Lithuanian University of Health Sciences; Faculty of Nursing– Kaunas, 2016, p. 71.
The number of older persons in the world is projected to be 1.4 billion by 2030. This data shows a phenomenon known as population ageing. Because of the phenomenon existing in both developed and developing countries, dementia has a growing public health relevance, making it pertinent area of research for Physical Medicine therapists, in this case brought about by measuring and comparing QoL factors and Independence in ADL for people with dementia in Lithuanian and Norwegian long term nursing homes
The aim of the research: This study sought to compare caregiver perception of the quality of life (QoL) and independence in activities of daily living of people with dementia and Alzheimer disease (AD) in residential care facilities and to identify the factors associated with their perception of QoL in Lithuanian and Norwegian long term nursing home [40, 41].
DATA SOURCES:Literature review, interviews and questionnaires, statistical analysis.
Objectives of the study:
1. Evaluate people with dementia QOL factors and ADL in Lithuania‟s „Pimonovu‟ nursing home.
2. Evaluate people with dementia QOL factors and ADL in Norway‟s „Engensenteret‟ nursing home.
3. Compare and contrast Lithuanian‟s and Norwegian‟s people with dementia QOL and ADL in nursing home.
Contingent and methods:The study population comprised 57 residents. The median age± standard deviation of the residents was
90.50±9,57 and 19% (n=11) male of 83±11,19 age. People with dementia (n=16) were 94% female and 6% male.
Methods: The study was conducted in two long-term care institutions for older persons of Kaunas (Lithuania) and Bergen (Norway). Carers were recruited for a survey on residents with dementia on the Dementia Quality of Life questionnaire (DEMQOL) and Katz Index of Independence in Activities of Daily Living (ADL).
Resultsand conclusions:This article described the results of comparative studies for Quality Of Life factors (QoL) and Independence in activities of daily living (ADL) on persons suffering from dementia in Lithuanian and Norwegian long-term nursing homes. We have selected and completed studies for the period following 2013. We compared the difference of validation of groups in moderately demented residents of a residential home by interviewing nurses, carers and assistants. The results of measuring their Quality of Life, using DEMQOL- Carer (PROXY) and Katz Index of Independence in Activities of Daily Living showed that residents in Lithuania‟s nursing home „Pimonovu‟ and in Norway‟s „Engensenteret‟ had some differences.
Only THREE randomized statistically reliable clinical trials were found by measuring Katz Index of Independence in Activities of Daily Living.
Activities as Bathing
Χ²=16,6 ͣ;𝑑𝑓=1;𝑝=0.000 had statistically reliable differences and AGE>85; Χ²=6,397 ͣ;𝑑𝑓=2;𝑝=0.045.
Measuring DEMQOL- Carer (PROXY) Everyday Life in item: Not having enough company statistically reliable clinical trials wereΧ²=8,043 ͣ;=3;𝑝=0.045
SANTRAUKA
Petrauskaite I., Sergančiųjų senatvine demencijairgyvenančių senelių namuosegyvenimo kokybę įtakojančių veiksnių ir kasdieninės veiklos vertinimas Lietuvoje ir Norvegijoje, magistrobaigiamasisdarbas –
mokslinėvadovėDr. Doc. DaivaPetruševičienė,
Lietuvossveikatosmokslųuniversitetas, Medicinosakademija, Slaugosfakultetas– Kaunas, 2016, p. 71.
Pasaulyje 2030 metais, numatoma 1.4
milijardųpagyvenusiųasmenų.Šieskaičiaiįrodofenomenąvadinamą “senėjantipopuliacija”.To pasekoje, demencijosdiagnozėssvarbasveikatospriežiūrojeyraopiproblemaišsivysčiusio mirbesivystančiomšalim.Tai puikiterpėfizinėsmedicinosterapeutamsįvertintiirpalygintiasmenų, turinčiųdemenciją, gyvenimokokybėsveiksniusirsavarankiškumąkasdieninėjeveikloje, LietuvosirNorvegijosseneliųnamuose. Darbotikslas: Įvertintiirpalygintigyvenimokokybėsveiksniusirsavarankiškumąkasdieninėjevei
kloje, asmenų, turinčiųsenatvinędemenciją,
apklausiantslaugytojusirasistentusLietuvosirNorvegijosseneliųnamuose.
Tyrimouždaviniai: 1.
Įvertintigyvenimokokybėsveiksniusirsavarankiškumąkasdieninėjeveikloje, asmenų, turinčiųsenatvinędemencijąLietuvos “Pimonovų” seneliųnamuose. 2. Įvertintigyvenimokokybėsveiksniusirsavarankiškumąkasdieninėjeveikloje, asmenų, turinčiųsenatvinędemencijąNorvegijos “Engensenteret”
seneliųnamuose. 3.
PalygintiLietuvosirNorvegijosgyvenimokokybėsveiksniusirsavarankiškumąkas dieninėjeveikloje, asmenų, turinčiųsenatvinędemenciją.
Tiriamųjųkontingentas: Tiriamųjųkontingentąsudarė 57 asmenysgyvenantysLietuvosirNorvegijosseneliųnamuoseirturintysdemencijos diagnozę. Vidutinistiriamųjuamžiusbuvo 88±10,6. Išjų 81% (n=46) sudarė moterys, kurių vidutinis amžius buvo 90.50±9,57 ir 19% (n=11) vyrų, kurių
Tyrime taikyti metodai: Tyrimas buvo atliktas Kauno (Lietuva) ir Bergeno (Norvegija) senelių namuose. Slaugytojai buvo apklausiami naudojant Demencija sergančiųjų gyvenimo kokybės klausimyną (DEMQOL) ir Katz indeksą, parodantį savarankišmumą kasdieninėje veikloje (ADL).
Rezultatai ir išvados: Surinkti ir apibendrinti duomenys 2013 metais, parodė tris statistiškai reikšmingus rodmenis.Naudojant Katz indeksą, nustatyta jog 80,6% asmenų, gyvenančių Lietuvos senelių namuose yra nesavarankiški ir priklausominuo darbuotojų, atliekant prausimasi vonioje, kaip kasdieninę veiklą. O 73,1% asmenų, turinčių demenciją ir gyvenančių Norvegijos senelių namuose, buvo nepriklausomi ir savarankiški, tai pačiai kasdieninei veiklai.
Taip pat nustatyta, jog Lietuvos senelių namuose asmenys 85 metų ir vyresni (62.5%), turi sunkų funkcinį sutrikimą (Χ²=6,397 ͣ;=2;𝑝=0.045), tuo tarpu Norvegijoje demencija sergančiųjų su tuo pačiu fukciniu sutrikimu yra 36,8%. Be to, Lietuvos senelių namuose (n=0) nebuvo rasta asmenų su aukštu savarankiškumu ir pilnai nepriklausoma fukcija. Lyginant su Norvegija- (n=6) 31,6%. Tad tai įrodo, Lietuvos senelių namuose gyvenančių ir turinčių demenciją asmenų kasdieninės veiklos (prausimasis vonioje) terapijos plano sudarymo ir vykdymo būtinybę.
Vertinant gyvenimo kokybės veiksnių, nustatyta, jog abejuose šalyse (Lietuvoje- 32.3%; Norvegija- 30.8%), asmenys, turintys demenciją ir gyvenantys senelių namuose neturi pakankamai kompanijos (Χ²=8,043 ͣ;=3;𝑝=0.045). Tai įrodo grupinės terapijos svarbą abejuose šalyse.
Galutiniam gyvenimo kokybės rezultatui nustatyti, buvo rasta, jog 34.5% Lietuvos ir 46,2% Norvegijos asmenų, turinčių demenciją, gyvenimo kokybė senelių namuose yra nebloga. Ir tik 9.7% Lietuvos ir 15.6% Norvegijos rezidentų, įvardijo gyvenimą senelių namuose, kaip labai gerą. Remiantis šiais rezultatais, galime sakyti, jog gyvenimo kokybę ir ją įtakojančių veiksnių gerinimo svarba yra aktuali problema abejuose šalyse.
A Activities of daily living (ADL)
ADL are routine activities that people tend do everyday without needing assistance. There are six basic ADLs: eating, bathing, dressing, toileting, transferring (walking) and continence. An individual's ability to perform ADLs is important for determining what type of long-term care (e.g. nursing-home care or home care) and coverage the individual needs
B Behavior
Actions or reactions of persons, usually in relation to their environment.Behavioral symptoms include disturbed perception, thought content, mood or behavior.
C Caregiver (informal)
Person who provides unpaid care by looking after family members, friends or partners with disabilities. A big chunk of all costs of dementia (more than 40% globally) is attributed to informal care. It is therefore worrisome that, while the cost of formal care in high-income countries continues to escalate to unsustainable levels, the availability of informal support is predicted to decline in all regions.
C Care-related quality of life
Care-related quality of life reflects and values the impact of informal caregiving on the caregiver‟s overall quality of life.
C Cognition
Mental processes characterized by attention, knowing, thinking, learning, remembering, language, planning action, and judging.
D Dementia
Progressive brain syndrome with significant loss of or decline in intellectual abilities such as memory, intellectual functions like reasoning and planning, and eventual loss of physical functions and personality, severe
enough to interfere with a person‟s daily social or occupational functioning. The symptoms may also include changes in mood and behavior. Dementia mainly affects older people, although there is a growing awareness of cases that start before the age of 65. After age 65, the likelihood of developing dementia roughly doubles every five years. Dementia affects 1 in 20 people above 65, 1 in 5 over 80 and 1 in 3 over 90 years of age. Alzheimer‟s disease (AD) is the most common cause of dementia and accounts for 60% of all cases. Other causes are vascular dementia (VD; 15%), mixed dementia (AD and VD; 13%) and remaining (12%), such as frontotemporal dementia, dementia with Lewy bodies and Parkinson dementia. Different types of dementia have been associated with different symptom patterns and distinguishing microscopic brain abnormalities. The symptoms of different types of dementia however may overlap and can be further complicated by coexisting medical conditions. Dementia is still an incurable disease, stressing the necessity of palliative care (see Palliative care).
D Descriptive quality of life instruments
Descriptive quality of life instruments (health profiles) comprise multiple dimensions of health status. A small set of related items covers the content of various health domains and a score for each dimension is generated based on classical test theory.4 The domains are regarded independently and their relative separate ratings are not intended to be aggregated into one score. Thus, these instruments are not appropriate to measure the overall level of health states. The SF-36 (Medical Outcomes Study 36-item Short-Form Health Survey) instrument is a frequently used descriptive generic quality of life measure worldwide.
I Index quality of life instruments
Index (preference or value-based) quality of life instruments evaluate the value that persons place on a particular health state and not directly the impact of a disease or treatment on their ability to function in life. Index measures quantify multiple health domains into one single figure. In the case of HRQoL, index measures quantify the desirability of a certain health state.6
preference, or weights) are often unambiguous; e.g., a value of 1.0 stands for „perfect health‟ and 0.0 for „death‟ (see Utilities). HRQoL values with metric characteristics are especially useful because they provide vital information for health outcome research and economic evaluations. The EuroQol-5 D (EQ-5D) is the most widely used HRQoL index instrument.7;8 Applicable to a wide range of health conditions and treatments, it provides a simple descriptive profile and a single index value (utility) for health status.
Q Quality of life
Definition according to the WHO: the perception of individuals of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns (WHOQOL 1995). Quality of life is a multidimensional construct of physical, material, social and emotional well-being, development and activity, and the ability to function in daily life. It is a broad ranging concept affected by the person‟s physical health, psychological state, level of independence, personal beliefs, social relationships, relationship to salient features of the environment, such as financial resources, accessibility and quality of professional care, opportunities for acquiring new information, skills and recreation. But, facets like transport, spirituality and religion are also involved. In this thesis the term „quality of life‟ can refer to both quality of life and health-related quality of life.
V VaMCI
INTRODUCTION
According to the United Nations World Population Prospects of the 2015 revision, 50.4 per cent of the world‟s population is male and 49.6 per cent is female. About 901 million 12 % of the world‟s people are 60 or over. The population aged 60 or above is growing at a rate of 3.26 per cent per year. The number of older persons in the world is projected to be 1.4 billion by 2030 and 2.1 billion by 2050, and could rise to 3.2 billion in 2100. This data shows phenomenon, known as population ageing (PROBLEM) [42].
On the basis of study in American Academy of Neurology (2000), European population-based samples of persons older than 65 years of age confirms that dementia is a frequent medical condition, particularly in the very old [44]. Sundaran (2011) says that age is the greatest risk factor for developing dementia [41]. It is an acquired syndrome of decline in memory and at least one other cognitive domain, such as language, visuospatial, or executive function, that is sufficient to interfere with social or occupational function in an alert person [45]. Moreover, it is an age-related progressive impairment of visual processing, problem solving skills, and eventually ability to function independently [45, 46].
Nursing homes are the most important institutions for the care of people with dementia. Because there is limited treatment for dementia, a positive attitude from health care professionals is important for providing a high quality of life in nursing homes.
Alzheimer Europe estimates (2014) the number of people with dementia in Lithuania is 47,335. This represents 1.44% of the total population of 3,292,454. In Norway - 77,158. This represents 1.56 % of the total population of 4,960,482 [48]. Therefore, it is necessary to examine QoL and ADL for people with dementia in both countries.
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There is no consensus regarding the optimal approach to assessment of the quality of life of people with dementia (Beer Ch, et. all 2010) [47]. We undertook the present study to describe and determine the factors associated with ratings of the quality of life of people with dementia living in Lithuanian and Norwegian long-term nursing homes.
Dementia is a common and disabling disorder in the elderly. Because of the worldwide aging phenomenon, existing in both developed and developing countries, quality of life factors and independence of daily living activities for people with dementia has a growing public health relevance [4]. The latest publication (April 16, 2015) of New Europa Investor, Lithuania is now a developed country. Even if Norway has the highest HDI (Human Development Index 2014), it is a topic for Physical Medicine therapist to investigate and compare QoL factors and Independence in ADL for people with dementia [4].
THE AIM OF THE RESEACH
This study sought to compare caregiver perception of the quality of life (QoL) and independence in activities of daily living of people with dementia and Alzheimer disease (AD) in residential care facilities and to identify the factors associated with their perception of QoL in Lithuanian and Norwegian long term nursing home.
OBJECTIVES OF THE RESEARCH
1. Evaluate people with dementia QOL factors and ADL in Lithuania‟s „Pimonovu‟ nursing home.
2. Evaluate people with dementia QOL factors and ADL in Norway‟s „Engensenteret‟ nursing home.
3. Compare and contrast Lithuanian‟s and Norwegian‟s people with dementia QOL and ADL in nursing home.
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LITERATURE REVIEW
Definition of Quality of LifeQuality of life (QoL) is a multi-dimensional concept that encompasses many personal characteristics such as ethnicity, geographic location, and religion (Rabins& Black, 2007) [3]. Also it is the perception of people of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns, irrespective of health status (WHOQOL 1995)[4], such as physical, mental, and spiritual health (Whitehouse &Rabins, 1992)[3]. It is also encompassing social, psychological, and physical domains (Birren, Lubben, & Rowe, 1991)[12]. According to Lawton (1994) quality of life in dementing illness comprises the same areas as in people in general [13].
QOL for dementia people who live in nursing home
The most important case is, that for individuals with dementia, as for most chronic degenerative diseases, the ability of health care providers to intervene and affect QoL is far greater than to affect the course of the disease [12]. Since dementia is a syndrome caused by a disease of the brain, usually of a chronic or progressive nature, refers to the progressive decline of cognitive, social, and physical functioning[3], involving disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment, QoL examination is needed. Impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration of emotional control, social behaviour, or motivation. [2].
Nursing homes are likely the most important institutions for the care of people with dementia. Because there is limited treatment for dementia, a positive attitude of heath care professionals is important to providing high – quality life of living in nursing home.[2] There are two primary arenas
within which dementia care takes place in the community: the individual‟s home and day care or institutional care (nursing home) canters. As dementia progresses, patients may become unable to stay at home or family caregivers may become unable to continue caring for them at home, so the patient must move to institutional care [2].The focus of improving the quality of life for people with dementia by addressing their psychosocial needs. Accordingly, achieving the best possible quality of care for people with dementia is viewed a crucial step in increasing patients‟ quality of life. [2]
QOL indementia
Quality of life as quality of carehas a multifaceted perspective. This requires a shift away from approaches that focus only on single areas of life (e.g. health, functioning, social support, life satisfaction, and well-being) towards an approach that also reveals the views of the persons with dementia. Quality of life is a dynamic construct with interactive domains and changing values resulting from processes such as aging, life experiences and diseases[4].
Overall assessment of people with dementia life is measured using three sub-dimensions: life satisfaction (cognitive appreciation), affect (a person‟s feelings or emotional states, both positive and negative, typically measured with reference to a particular point in time) and eudaemonics (a sense of having meaning and purpose in one‟s life, or good psychological functioning.). These indicators are currently being collected within the 2013 EU-SILC Ad-Hoc Module [1].
QOL indicators:
Quality can be assessed based on structure, process and outcomes. And it can be measured using quality indicators. [2] According to the Eurostat online publication (data from October 2013), there are 8+1 dimensions which
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can be measured statistically to represent the different complementary aspects of quality of life [1].
QoL in dementia needs to be conceptualized as a complex, comprehensive construct if researchers are to understand fully the impact of dementing illness [12]. It includes perceptions of overall quality of life:
1. health,
2. physical and material well-being (feelings), 3. work,
4. family,
5. social relationships,
6. community- and social activities (in everyday life), 7. personal development,
8. personal achievements, 9. happiness,
10. life satisfaction,
11. personal experiences and values,
12. active recreation (independence in activities of daily living), 13. learning, education, and leisure [4].
An indicator is a „measure element of practice performance for which there is evidence or consensus that it can be used to assess the quality, and hence change in the quality of care provided [2]. However, they are often quite similar to those for people of younger ages [12]. Objective information can be described with descriptive indicators [4]. According to the statistical office of the European Union “Eurostat”(data from October 2013), health conditions in Europe are mainly measured using objective health
outcome indicators such as life expectancy, infant mortality, the number of healthy life years. [1] And subjective information is described with evaluative indicators (e.g. satisfaction with a descriptive indicator). Both approaches are complementary and should not be treated as opposites [4] because subjective states can be difficult to measure in dementia patients [12]. Thus, quality of life is on the one hand objective, external and quantitative, but on the other hand subjective, internal and qualitative [4].Moreover, the QoL of elderly people has become relevant with the demographic shift that has resulted in greying of population. There are indications that concepts and concerns related to QoL in older ages are different from the general population [14].
Gender, age
If we look on average for European women (83.2 years), we could see that they continue to live longer than European men (77.4 years), according to the latest available data at the time of extraction (2011). On the other hand, life expectancy for men seems to be rising faster, increasing by 2.9 years between 2002 and 2011, compared to 2.3 years for women [1]. According to Sundaran (2011),advanced age is the greatest risk factor for developing dementia. [2]
The self-perception of ill health among those over 65 is especially high in Lithuania, where around half of the population over 65 describes their health status as bad or very bad.While there is no difference, on average, in the level of life satisfaction of men and women, age does seem to play a determinant role: life satisfaction consistently decreases with age until the age of 65, after which it increases again, sometimes leading to levels of life satisfaction for senior citizens similar to or even exceeding those of the youngest generation [1]. But 17% people in Lithuania are over age 65 (male 207,222/female 389,345) (2014 est.) [15]. It this case it is a topic, to investigate age over 65 for people with dementia. Cause it is important
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indicator as for the demographical ageing of the population. This is the fluctuation of the population age structure, which is characterized by increase of the total number elderly people and / or theirs relative part in the population [5].
Alzheimer Europe (2014) estimates the number of people with dementia in Lithuania as being 47,335. This represents 1.44% of the total population of 3,292,454. Compare it with Norwegian demographic statistic, we can see that 16.1% of all Norwegian population are 65 years and over (male 375,909/female 453,748) (2014 est.) and people with dementia in Norway in 2012 as being 77,158. This represents 1.56 % of the total population of 4,960,482. The number of people with dementia as a percentage of the population is somewhat lower than the EU average of 1.55%. These numbers show us that ageing and dementia diagnose has an impact for various areas of society. Therefore it„s necessary to investigate of QoL and Independence in activities of daily living for people with dementia in Lithuanian and Norwegian nursing home for elderly people [5, 16].
Leisure and social interactions
The power of networks and social connections should not be underestimated when trying to measure the well-being of an individual with dementia diagnose, as they directly influence life satisfaction, as well [1]. Thus, proxy measures are the most common methodology employed to collect data about persons with dementia. The use of proxies to measure QoL in dementia patients may decrease nonresponse, but it creates an additional set of difficulties and show problems, that could be inscribe for the future habitation or rehabilitation plans. Characteristics of the proxy such as the nature of the relationship, the degree of objectiveness of the questions, and the level of impairment of the patient may influence the degree of correspondence between patient and proxy responses (Magaziner, Simonsick, &Kashner, 1988; Zimmerman &Magaziner, 1994) [12].
Social interaction for dementia people living in nursing home:
Domains of QOL in patients with dementia include competent cognitive functioning, the ability to perform activities of daily living and to engage in meaningful time use and social behaviour, and a favourable balance between positive emotion and absence of negative emotion. Dementing illness can strip the person of normal indicators of personhood, while living in nursing home. Formal assessment of such QoL indicators can counteract the tendency to view QOL as irrelevant to dementing illness. Sometimes people with dementia, staff and carers had differing views about what made activities meaningful. Organisational limitations and social beliefs limited the provision of meaningful activities for this population. So the main thing is to focus on three QoL indicators, such as feeling, memory and everyday life activities, who could show us the exactly the right view of living with dementia in residential care facilities[13].A preliminary report of on-going research to evaluate a special care unit for patients with AD includes findings on measuring positive behaviours and both positive and negative emotion. Emotions judged from direct observation showed promising reliability and validity. Thus, it may be possible to assess the preferences, aversions, and response to interventions of dementia patients even when the patients cannot report their evaluations [13].
Supportive relationships
It has been shown [4] that life satisfaction, a subjective indicator of quality of life, improves with the availability of practical, moral and financial support from family and friends [1].These findings suggest that the risk of poverty is linked to factors that have a negative impact on subjective well-being and quality of life and that the section of the population facing that risk is more likely to suffer from multiple deprivations. People who are 65 or older are also less likely to attend leisure activities outside the house and engage
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less in informal voluntary activities compared to younger ones. However, the percentage of people able to ask nursing home staff for help is the same for the two gender groups [1].
Moreover, social interactions, interpersonal activities and relationships, apart from satisfying a primeval human need for existence in a social milieu (loneliness being a factor that is detrimental to quality of life), also constitute a „social capital‟ for individuals.[1] Moreover, there are a number of dementia- specific concerns have been identified, including the need for gainful occupation and companionship during daytime hours. A study conducted by Ballard and co- workers (2001) found that demented nursing home patients spend only 50 minutes of a 6- hour observation period (14% of the time) communicating with staff members or other residents and less than 12 minutes (3% of the time) participating in everyday constructive activities. An investigation of Norwegian nursing homes found that patients did not participate in leisure activities, such as going out for a walk. [2] However, there is more to quality of life than mere satisfaction derived from social interactions with friends, relatives and colleagues and engaging in activities with people. The quality of social interactions also encompasses our need to engage in activities for people with dementia, the existence of supportive relationships, interpersonal trust, the absence of tensions and social cohesion [1].
MATERIAL AND METHODS
Participants
The study population comprised 57 residents after bioethical comity gave as permission (number BEC-FMR (M)- 395) for the investigations. The participants were selected of relatively in two long-term care institutions for older persons of Kaunas „Pimovovų globos namai“(Lithuania) and Bergen
“Engen nursing home”(Norway). The characteristic of the groups age are provided in the table nr 1. Only people with a diagnosis dementia and livings in nursing home were chosen as participants.
The median age± standard deviation of the residents was 88±10,6 years for all study group. There were 31 people with dementia in Lithuanian nursing home, that median age was 86±10,59, while in Norwegian were 26 residents with age 91±9,87.An Italian study of over 2000 seniors over 80 years old confirms that dementia does indeed keep increasing with age (it had been thought that risk levelled off for those who reached their 90s). The study found that 13.5% of those aged 80 to 84 had dementia, rising sharply to 30.8% of those 85 to 89, 39.5% of those 90 to 94, and 52.8% among those older than 94 [17].
Table 1. Characteristic of the resident age
All participants Lithuania Norway
Median±Standa
rd Deviation 88±10,55 86±10,59 91±9,87
Count 57 31 26
According to an American study of over 900 seniors over 90 years old found that women of this age were much more likely to have dementia than men (some 45% of them, compared to 28% of the men), and that the likelihood of having dementia kept increasing with age for the women, but not for the men [17].In this study group were 81% (n=46) female with the median age of 90.50±9,57, table nr 2. In Lithuanian residential care home female with age 86±10,69 were 84% (n=26) and in Norwegian 77% (n=20) with age 93,5±6,25. Similar number was found in Netherlands study (2016) were the mean age of the 115 participants was 84 years and most (75%) were women
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[18]. As we can see female gender for dementia diagnose is a common reason.
Table 2. Characteristic of the female age
All
participants Lithuania Norway Median±Standard
Deviation 90,5±9,57 86±10,69 93,5±6,25
Count (%) 46 (81) 26 (84) 20 (77)
As we can see in table nr 3, for all participants group, just 19% (n=11) was male of age 83±11,19. In Lithuanian nursing home were 16% (n=5) male with age 95±6,38 and in Norwegian 23% (n=6) with age 81±11,34.
Table 3. Characteristic of the male age
All
participants Lithuania Norway Median±Stan
dard Deviation 83,5±11,19 95±6,38 81±11,34
METHODS:
Gold standard psychometric techniques were used to develop DEMQOL-Proxy. A conceptual framework was generated from a review of the literature, qualitative interviews with carers in Lithuanian and Norwegian residential home, expert opinion and team discussion. Items for each component of the conceptual framework were drafted to produce questionnaires for the carer (DEMQOL-Proxy) [20]. It was developed according to best quality psychometric principles by a multidisciplinary team including BSMS, KCL, the London School of Hygiene and Tropical Medicine, the London School of Economics and Nottingham and Sheffield Universities. DEMQOL is designed to work across dementia subtypes and care arrangements and can be used at all stages of dementia [22].
Dementia Specific Health Related Quality of Life Measures
DEMQOL- carer (version4)(figure nr. 2) is a 31 item interviewer-administered questionnaire answered by a caregiver. Purpose: To assess quality of life in persons with mild to moderate dementia.
Admin time: 10-20 Min
User Friendly: High
Administered by: Interviewer with patient and/or informant. Most Appropriate: Primary, Community and Residential Care.QoL for persons with dementia regardless of age [19].
The Katz Index of Independence in Activities of Daily Living (figure nr. 1), commonly referred to as the Katz ADL, is the most appropriate instrument to assess functional status as a measurement of the client‟s ability to perform activities of daily living independently. Clinicians typically use the tool to detect problems in performing activities of daily living and to plan care accordingly.
The Index ranks adequacy of performance in the six functions of bathing, dressing, toileting, transferring, continence, and feeding. Clients are
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scored yes/no for independence in each of the six functions. A score of 6 indicates full function, 4 indicate moderate impairment, and 2 or less indicates severe functional impairment.
It has consistently demonstrated its utility in evaluating functional status in the elderly population. Although no formal reliability and validity reports could be found in the literature, the tool is used extensively as a flag signalling functional capabilities of older adults in clinical and home environments.The Katz ADL Index assesses just basic activities of daily living. It is limited in its ability to measure small increments of change seen in the rehabilitation of older adults. A full comprehensive geriatric assessment should follow when appropriate. The Katz ADL Index is very useful in creating a common language about patient function for all practitioners involved in overall care planning and discharge planning [24].
PROCEDURE OF TESTING
The interview
Carers were recruited for a survey on residents with dementia on the Dementia Quality of Life questionnaire (DEMQOL- Carer-Proxy (version 4)) and Katz Index of Independence in Activities of Daily Living (ADL). Only Interviewer Manual Instructions for administration was used as guideline [23, 25].
At the interview, carers familiarise themselves with the classification system and then were asked to choose right item in the classification system of the instrument (the DEMQOL- Carer and Katz Index of Independence in ADL). Respondents were guided through one practice exercise to ensure that
they understood the task. They were also asked a number of sociodemographic questions [21].
Statistical analysis
Data were analysed using mathematical statistical methods. For statistical calculations we used SPSS.20 and Excel 2007 software. Significance was set at a level of p<0.05, to summarize a single categorical variable, we use frequency tables. To summarize the relationship between two categorical variables, we use a cross-tabulation (also called a contingency table). A cross-tabulation (or crosstab for short) is a table that depicts the number of times each of the possible category combinations occurred in the sample data.
And for the the differences between countries we used Chi-Square Tests (χ² “chi-squared” = distribution for multinomial experiments and contingency tables).
Here:
O = Observed frequency E = Expected frequency
26 #∑ = Summation
X²= Chi Square value
Summary statistics were used to describe and comparison the distributionof responses on the carer report DEMQOL- Carer (version 4) and Katz Index of Independence in Activities of Daily Living (ADL) in Lithuanian and Norwegian nursing home for people with dementia. Construct validity was also further examined using known group differences based on recommended thresholds from questioners [23, 25].
RESULTS AND DISCUSSION
Note: Main information of the results is discussed in this part.With all due respect for the reader, the tables of results are in appendix part.
QOL factors
DEMQOL-Proxy questioner was used to derived from the carer-reported measure of QoL factors for people with dementia and it was distribute in 4 dimensions (cognition, positive emotion, daily activities, appearance, and negative emotion), each with 4 levels of severity: a lot; quite a bit; a little; not at all.
For the cognition factor in any of items no randomized statistically reliable clinical trials were found. But different between countries were revealed.
Dementia criteria based on memory deficits could be derived from concepts proposed for memory loss, in which memory-related structures could be intact, resulting in relatively preserved memory functions [26]. This leads to cognition impairment that affects people daily living but not quality of life. For example, study show, that 29% (n=9) of all residents with dementia in Lithuanian nursing home and 15.4% (n=4) in Norwegian were worried (table 4)themselvesa lot of their memory in general. But 53.8% (n=14) residents were worried just a little of their memory in Norwegian nursing home, compare with 25.8% (n=8) Lithuanian.Similar results were found in this research for residents worry if they forget things that happened recently (table 5). 38.5% (n=10) of Norwegian residents and 32.3% (n=10) of Lithuanian with dementia in nursing home were worried a lotfor forgeting things that happened recently. Moreover, in both countries around 35% (35.5 (n=11)) in Lithuanian and 34.6% (n=9) in Norwegian) of all residents were not worried at all, that
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they forget thing that happened long time ago(table 6). Clinical studies from the American Heart Association/American Stroke Association have shown that subjects with VaMCI (vascular mild cognitive impairment) can present with a broader cognitive impairment, which can also include memory deficits. These definitions are primarily applied in research studies but may provide an initial useful platform for classifying patients in practice for their relation between QoL and memory impairment [26].Otherwise, Woods (2014) says, that cognitive impairment was not related to QoL [27]. More studies needed.
Furthermore, a number of studies also show similar associations with memory impairment for people with dementia [26]. Memory-related cognitive deficits to QoL factors for daily living, has found in this study too. People with dementia were worried a lot for their difficulty making decisions (table 7), for this part, similar results was found comparing countries: 35.5% (n=11) in Lithuanian and 30.8% (n=8) in Norwegian nursing home. Also, no comparative results (51.6% (n=16) in Lithuanian and 76.9% (n=20) in Norwegian nursing home) was found in both residential home, were people worried a lot that forgets people‟s names(table 8) or what day it is (table 9)(48.4% (n=15) in Lithuanian and 73.1% (n=16) in Norwegian nursing home). Other very important factor is understanding your location, especially for people with dementia. Results show, that 35.5% (n=11) in Lithuanian and 34.6% (n=9) in Norwegian nursing home, people with dementia were worried a lot where there are (table 10). This shows that getting lost outside is
stressful for people with dementia and their caregivers and a leading cause of long-term institutionalisation. Although Global Positional Satellite (GPS) location has been promoted to facilitate safe walking, reduce caregivers‟ anxiety and enable people with dementia to remain at home, there is little high quality evidence about its acceptability, effectiveness or cost-effectiveness. This observational study explored the feasibility of recruiting and retaining participants, and the acceptability of outcome measures, to inform decisions about the feasibility of a randomised controlled trial [32]
The main meaning of the metaphors about dementia includes stories about a people gradually losing control, being less recognizable, and
becoming stranger. Finally, the people with dementia are lost in his or her world, a place where the carers can no longer reach the patient [29]. But 25.8% (n=8) in Lithuanian and 34.6% (n=9) in Norwegian nursing home was not at all hard to make themselves understood (table 11). Moreover, 41.9% (n=13) in Lithuanian and 23.1% (n=6) in Norwegian were quite a bit worried that they not playing a useful part in things(table 12)and25.8% (n=8) in Lithuanian and 15.4% (n=4) in Norwegian were worried a lot. The research literature clearly indicates that persons with dementia have an under-reporting bias: that is, when they report about their situation inaccurately, they tend to play down the presence/intensity/impact of their symptoms. This is probably due partly to memory problems and partly to social-desirability effects. Regarding the former, the patient may have difficulty remembering specific instances of the construct on which he/she is being questioned and, thus, may fail to report those instances of anxiety. Regarding the latter, as other
cognitive abilities diminish, people with dementia rely particularly heavily on the social skills to get along in the world. Thus, people with dementia may be even more reluctant than a cognitively intact person to “complain” to a
stranger about things that are not going well. Thus, the assessor must rely on the collateral to provide indications as to when the person with dementia is under-reporting. [33]
The development and course of the dementia disorder of all people with dementia in both countries was gradual, from the nearly unnoticeable changes in habits and reactions, to more obvious deviances from normal behaviour [29]. 29% (n=9) people with dementia living in Lithuanian nursing home and 42.3% (n=11) in Norwegian, worried that now things taking longer than they used to (table 13). Memory impairment for daily living in ageing is clearly different from dementia. Many papers dealer with the modifications of the different cognitive sections of memory. [34] As we can see people with dementia are worried, that their memory impairment is connecting to others.
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Moreover, individuals with suspected dementia who have been referred to a memory clinic may begin the assessment process with the belief that early intervention may slow the disease process. Family members may share this perception. The transition from being muddled (table 14) or forgetful to having a diagnosis of dementia is characterised by uncertainty and often by lengthy waiting, which may be misunderstood as a sign that a problem is not serious or that the patient is not a priority. The setting where diagnostic assessments take place can adversely affect patients‟ and carers‟ perceptions of dementia syndrome. For example, this study show, that 38.7% (n=12) Lithuanian and 23.1% (n=6) Norwegian people with dementia were quite a bit worried, that they are muddled. And 35.5% (n=11) Lithuanian and 38.5% (n=10) Norwegian residents were worried for the same just a little [28]
Perhaps the most challenging aspect of measuring QOL in dementia relates to the construct‟s subjective nature. 32.3% (n=10) people living in Lithuanian nursing home were not at all worried of their physical health (table 15), while 38.5% (n=10) Norwegian were worried quite a bit for their health. Dementia impairs memory, insight, judgment and problem solving; affects attention, behaviour, personality and communication skills; all of which can influence QOL as well as one‟s ability to conceptualize and express an opinion on one‟s QOL[31].
Table 4.The overall of DEMQOL-Proxy items
Factor(dimensi ons) I Ite m Result Cognition Q 14.
How worried would you say [patient] has been about forgetting things that happened recently? Χ²=0,710 ͣ;𝑑df=3;p=0.8 47 Q 18.
How worried would you say [patient] has been about his/her thoughts being muddled?
Χ²=1,334 ͣ;𝑑𝑓=3;𝑝=0.75 2
Q 12.
[patient] has been about his/her memory in general?
7
Q 19.
How worried would you say [patient] has been about difficulty making decisions? Χ²=1,710 ͣ;𝑑𝑓=3;𝑝=0.66 2 Q 15.
How worried would you say [patient] has been about forgetting people‟s names?
Χ²=4,975 ͣ;𝑑𝑓=3;𝑝=0.17 5
Q 17.
How worried would you say [patient] has been about forgetting what day it is?
Χ²=4,476 ͣ;𝑑𝑓=3;𝑝=0.22 1
Q 30.
How worried would you say [patient] has been about not playing a useful part in things?
Χ²=5,272 ͣ;𝑑𝑓=3;𝑝=0.16 3
Q 20.
How worried would you say [patient] has been about making him/herself understood?
Χ²=1,710 ͣ;𝑑𝑓=3;𝑝=0.66 2
Q 31.
How worried would you say [patient] has been about his/her physical health? Χ²=5,366 ͣ;𝑑𝑓=3;𝑝=0.15 6 Q 13.
How worried would you say [patient] has been about forgetting things that happened a long time ago?
Χ²=6,101 ͣ;𝑑𝑓=3;𝑝=0.10 3
Q 16.
How worried would you say [patient] has been about forgetting where he/she is?
Χ²=2,363 ͣ;𝑑𝑓=3;𝑝=0.52 4
Q 26.
How worried would you say [patient] has been about things taking longer than they used to?
Χ²=5,083 ͣ;𝑑𝑓=3;𝑝=0.18 0
emotion 5. felt sad?
Q 7.
Would you say that [patient] has felt distressed? Χ²=3,816 ͣ;𝑑𝑓=3;𝑝=0.28 1 Q 10.
Would you say that [patient] has
felt fed up? Χ²=7,506 ͣ;𝑑𝑓=3;𝑝=0.05
Q 2.
Would you say that [patient] has felt worried?
Χ²=4,728 ͣ;𝑑𝑓=3;𝑝=0.19 9
Q 28
How worried would you say [patient] has been about not having enough company?
Χ²=8,043 ͣ;𝑑𝑓=3;𝑝=0.04 5
Q 3.
Would you say that [patient] has felt frustrated? Χ²=6,387 ͣ;𝑑𝑓=3;𝑝=0.09 8 Q 9.
Would you say that [patient] has felt irritable? Χ²=1,454 ͣ;𝑑𝑓=3;𝑝=0.71 8 Daily activities Q 24.
How worried would you say [patient] has been about using money? Χ²=3,583 ͣ;𝑑𝑓=3;𝑝=0.33 6 Q 25.
How worried would you say [patient] has been about looking after his/her finances?
Χ²=1,494 ͣ;𝑑𝑓=3;𝑝=0.69 6
Q 29.
How worried would you say [patient] has been about not being able to help other people?
Χ²=0,687 ͣ;𝑑𝑓=3;𝑝=0.89 5
Q 23.
How worried would you say [patient] has been about getting what he/she wants from the shops? Χ²=1,6 ͣ;𝑑𝑓=3;𝑝=0.681 Positive emotion Q 8.
Would you say that [patient] has felt lively? Χ²=1,454 ͣ;𝑑𝑓=3;𝑝=0.71 8 Q 4.
Would you say that [patient] has felt full of energy?
Χ²=6,387 ͣ;𝑑𝑓=3;𝑝=0.09 8
Q 27.
How worried would you say [patient] has been about getting
Χ²=2,660 ͣ;𝑑𝑓=3;𝑝=0.48 1
Q 1
Would you say that [patient] has felt cheerful?
Χ²=7,435 ͣ;𝑑𝑓=3;𝑝=0.06 0
Q 6.
Would you say that [patient] has
felt content? Χ²=4,805 ͣ;𝑑𝑓=3;𝑝=0.2
Q 11.
Would you say that [patient] has felt that there are things to look forward to? Χ²=3,737 ͣ;𝑑𝑓=3;𝑝=0.30 6 Appearance Q 21.
How worried would you say [patient] has been about keeping him/herself clean? Χ²=3,387 ͣ;𝑑𝑓=3;𝑝=0.36 5 Q 22.
How worried would you say [patient] has been about keeping him/herself looking nice?
Χ²=3,519 ͣ;𝑑𝑓=3;𝑝=0.34 0
Negative emotion
For the negative emotion factor were 7 items to question. We asked carers if in the last week person with dementia were worried or anxious, frustrated, sad, distressed, irritable and fed- up. The result between countries were, that 45.2% (n=14) people with dementia were a lot worried or anxious (table 16) in Lithuanian nursing home and 42.3% (n=11) of Norwegian residents were worried or anxious „a little“. Study show that interaction effects for DEMQOL health status valued by people with dementia with more severe health problems in the negative emotion dimension had large coefficients than the other health state. Moreover, it can be directly compared across different countries [21].
In the study of Influencers on quality of life as reported by people living with dementia in long-term care W. Moyle (et all, 2015) says that one participant notably emphasized the importance of activities through sharing the negative effects of not having something to do on their QOL. But our study
shows that 35.5% (n=11) people in Lithuanian and 42.3% (n=11) in Norwegian nursing home were a little frustrated (table 17), and 3.8% (n=1) of
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them were worried about this negative emotion just a little. Meanwhile, bigger results were found for person with dementia sadness (table 18): 50% (n=13) of Norwegian were sad just a little, compare with 32% (n=10) Lithuanians, who were sad a lot.Similar comparative result was given for persons distressing: 42.3% (n=11) living in Norwegian nursing home was distressed (table 19) just a little, while 29% (n=9)of people living in Lithuanian nursing home were distressed a lot. Whoever, other two negative emotion factors result were similar too: 38.5% Norwegian were irritable a little and 39% of respondents felt irritable (table 20) a lot in Lithuanian nursing home. A little fed- up were 53.8% in Norwegian nursing home and 39% in Lithuanian, who were fed- up (table 21) a lot. That shows, that people with dementia, who lives in Norwegian nursing home are worried for negative emotion just a little, while people in Lithuanian nursing home are worried for their negative emotions a lot. Maybe it could be, as Moyle says (2015), that participants felt that the facility challenged their independence this negatively affected their QOL. People living in Lithuanian nursing and carers should establish this question. The last, but not least item of negative emotion was not having enough company (table 22). Results show randomized statistically reliable clinical trial of people with dementia was not having enough company at all in both countries: Lithuanian nursing home (32.3%) and Norwegian (30.8%). As C. Castillo (2010) study reviled that the most frequent unmet needs for people with dementia were company (60, 39.5%). Moreover, higher number of behavioural and psychological symptoms, low-community involvement social networks, having a younger carer and higher carer's anxiety were found to be predictors of higher unmet needs for people with dementia. Social networks and behavioural and psychological symptoms had an indirect effect on people living in nursing home self-rated quality of life through unmet needs [36].
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So we measured their daily activities in four items. All of them were to ask about people with dementia finance activities. For example, 38.5% of Norwegian and 25.8% Lithuanian people living in nursing home were a little worried to get what they want from the shop (table 23). And 34.6% Norwegian and 41.9% Lithuanian people with dementia were not at all using money to pay for things (table 24). Moreover, 41.9% Lithuanian and 50% Norwegian people with dementia and living in nursing home were not looking after their finances (table 25) at all. This burden could affect their physical, psychological, social relationship, and environmental QOL [37].Cause follows study confirmed it that 28.1% (n=9) Lithuanian and 34.6% (n=9) Norwegian people with dementia were worried, that they can‟t be able to help other people (table 26).
Positive emotion
Emotionally meaningful relationships are thought to be conducive to positive emotional experiences; however, according to our view, a small network of emotionally close individuals also has greater potential for generating distress or negative affect when those network members
experience suffering. Investing in emotionally meaningful relationships is a double-edged sword; it increases opportunities for positive emotion in QoL for people with dementia [38]. In this study we can see that Measuring Quality of Life, using DEMQOL- Carer person with dementia has felt cheerful (table 27) in the last week The biggest different between countries that 32.3% (n=10) people with dementia are “not cheerful at all” in Lithuanian nursing home while in Norwegian were just 3.8% (n=1). But 38,5% (n=10) of people with dementia in Norwegian nursing home were cheerful just a little.But 30.8% of Norwegian and 29% of Lithuanian people with dementia living in nursing home were quite a bit full of energy (table 28) in the last week. Moreover 19.2% Norwegian and
25.8% of Lithuanian residents were full of energy a lot for the last week. According to M. Sakamoto (et all, 2013) in accordance with Hall and
Buckwalter's model, Gerdner (2000) reported that agitation and stress were 36
reduced by listening to familiar “individualized music” that evoked positive emotions in patients with severe dementia, eliciting recall of pleasant
memories. In their study, they defined individualized music as music that has been integrated into person's life, chosen on the basis of personal preference (Gerdner and Swanson, 1993). Another study reported that, in healthy
subjects, the autonomic nervous system becomes activated when listening to music that is self-selected to evoke joy, resulting in the release of dopamine (Salimpoor et al., 2011). Moreover, a study of elderly individuals (healthy or with mild dementia) reported that autobiographical memories are elicited by popular music that evokes emotions (Schulkind et al., 1999; Irish et al., 2006). [39].
Appearance
Evaluating DEMQOL- CARER (Version4) questionnaire part of residents Everyday life in appearance, 12.9% of residents in Lithuanian nursing homewerea littlekeeping him/herself clean (eg washing and bathing)(table 29) and more than double30.8% of residents in Norwegian nursing home. But just (n=5), 16.1% of residents in Lithuanian and (n=5), 19.2% in Norwegian nursing home were keeping him/herself clean (eg washing and bathing) a lot.Quite a bit were32.3% of residents in Lithuanian and 19.2% in Norwegian nursing home. The biggest results of keeping him/herself clean not at all were in Lithuania, more than 38% (12) of all 31 residents. While in Norway were just 8, 30.8%. In total count checking residents keeping him/herself clean as a lot in everyday life were just 10, 17.5% in both countries. In Lithuania were 5 older people with dementia or 16.1%, who were keeping him/herself cleana lot, and 5 residents or 19.2% in Norway.
To sum up residents keeping him/herself clean (eg washing and bathing) in everyday lifequestion, we could say that in both countries older
10, 17.5% of all participants in both countries try to keep their self-clean a lot in everyday life.According to the Alzheimer‟s Society in Scotland (2015)
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personal care activities, including washing and bathing, are extremely private. They are a common source of anxiety for people with dementia and can also be difficult for carers [7].There could be possible causes of these results:
memory loss that makes him/herself unable to keep track of or care about bathing;
feels confusion about the sequence of steps involved;
feels juvenile, anxious, or defensive when asked or reminded about bathing.
Recommendation: As Physical Medicine and Rehabilitations therapists we could:
stick to a consistent bathing routine;
don't remind or even mention how long it's been since the last clean-up;
have everything ready so you don't leave the person alone [8].
People with dementia are less able to take care of themselves as the disease progresses. At first, a person may need only prompting or a little help, but eventually caregivers will become responsible for all personal care. So it is important, that older person is trying to look nice, and taking care of their beauty themselves [9]. According to DEMQOL- CARER (Version4) questionnaire part of residentsEveryday lifeitem 21:keeping him/herself looking nice (table 30)people with dementia in Lithuanian nursing home were 7, 22.6% and 8, 30.8% in Norwegian nursing home who were trying to look nice a lot. As for item quite a bit, in Lithuania were 9, 29.0% and in Norway 6, 23.1% older people who were trying to look nice. Just a little was 5, 16.1% in
Lithuanian nursing home and 8, 30.8% in Norwegian. But results showed, that residents in Lithuanian nursing home 10, 32.3% were more passive for not at all trying to keep him/herself looking nice, while in Norwegian nursing home
38
were just 4, 15.4% of all participants who were not at all trying to keep him/herself looking nice.
As from the results, we can see that the biggest difference between countriesare in item a littleandnot at all of keeping him/herself looking nice. Older people with dementia in Lithuanian nursing home take less careof themself to look nice (32.3%), then in Norwegian (15.4%).
Overall QoL experience of life
There are also regional patterns. Apart from the Nordic countries, people in western and southern Europe tend to be more satisfied with their lives than people in the Baltic countries.For example, the Nordic countries, who have the highest levels of life satisfaction, also have the highest levels of positive answers for this question:we assessed that the residents‟ quality of life is fair for 46,2% of Norwegians and 34.5% of Lithuanians. What is more, only 9.7% of Lithuanian and 15.6% Norwegian residents named it as very good.This calls for group therapy and improving relationships among people with dementia and those with carers. The focus could be on service quality of therapists and even voluntary organisations should be encouraged. If patients are not competent to make a decision for therapy, the requirements would be issued by carers or family members.
This is probably due to the many practical and complex methodological problems one runs up against in experimental research in this field such as:
the lack of appropriate measurement instruments,
subjective experience of quality of life and activities of daily living for people with dementia by carers‟ view,
of dementia.
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KATZ index of independence of daily living
Age>85; KATZ index
Some studies have found that dementia appears to increase dramatically with age (Alzheimer‟s Association 2012). Case in U.S.A (n=231) for age over 85, people with dementia named “oldest-old.” This phenomenon was found in our comparative studies(Χ²=6,397 ͣ;=2;𝑝=0.045). In the Lithuanian nursing home people with dementia of age>85 had severe functional impairment (62.5%) compared with the Norwegian (36.8%) nursing home. Moreover, no residents (n=0) with high, full independent function were counted in the Lithuanian nursing home, compared with Norwegian (n=6, 31.6%). For the reason of these results, no occupational therapy could be implemented for people with dementia on their independence of daily living. Additional studies are needed. Furthermore, no „Dementia Strategy 2020” was found in the Lithuanian national dementia plans. While Norway has officially released Norwegian dementia strategy 2020-“A more dementia-friendly society”. Foundation was given for all Alzheimer Europa members. Bathing; KATZ index
Measuring Katz Index of Independence in Activities of Daily Living „bathing” had statistically reliable differences(Χ²=16,6 ͣ;𝑑𝑓=1;𝑝=0.000) between Lithuanian and Norwegian people with dementia living in long-term nursing home. More than 80% of all Lithuanian residents (80.6%) were assessed as dependent for bathing in everyday activity. And 73.1% people with dementia were independent for bathing in Norwegian nursing home. According to the world Alzheimer report (2013), dependence is sometimes inferred from the presence of severe disability, that is someone with extreme
difficulty or incapacity to perform a task is presumed as needing help or care. The reason for that could be: memory loss (impaired ability to learn new information or to recall previously learned information), aphasia (loss of ability
40
to use language to communicate), agnosia (loss of the ability to comprehend the meaning of sensory stimuli, as in the inability to recognize objects or people), apraxia (loss of the ability to make voluntary movements), and disturbances in the executive functions (planning, organizing, sequencing, abstracting) [12].
Everyday life” item: Not having enough company; DEMQOL- Carer (PROXY)
Measuring quality of life factors for people with dementia by DEMQOL- Carer (PROXY) questionnaire, we assessed a statistically reliable „everyday life” item: Not having enough company (Χ²=8,043 ͣ;=3;𝑝=0.045). People with dementia were not having enough company at all in both countries: Lithuanian nursing home (32.3%) and Norwegian (30.8%).
CONCLUSION
Results showed that only three randomized statistically reliable clinical trials were found. Maybe it was because the carers‟ view of people with dementia and their quality of life and daily living activities was subjective. Focus on residents‟ opinions, compared to those of carers for future studies.
However, as we could see dementia progress affects the physical capacity of people of over 85 years of age in their independence of daily living.
Measuring independence in daily living for both countries, we find that the biggest difference was between the age group of over 85 and especially affecting the bathing function. Residents in the Lithuania‟s nursing home are severely dysfunctional, compared with full independence function residents in Norwegian nursing home for taking bath. Dementia refers to a global loss of
severe enough to interfere with social and occupational performance.
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For people suffering from dementia, the unique characteristics of the disease lead to sometimes subtle and sometimes obvious differences in the importance and definition of specific QoL domains and subdomains. It is only by appreciating these differences that an accurate, comprehensive, disease specific conceptualization of QoL can be developed for dementia. Additional impetus for a disease-specific instrument is found in the need to evaluate new therapies. Many studies have shown that the effects of any therapeutic intervention to improve QoL are best measured with sensitivity by disease-specific instruments that focus on the domains most relevant to the disease under investigation and on the characteristics of patients in whom the condition is present
On the other hand, if we follow a 75-year-old study on adult happiness and satisfaction development discussed in a TED Talk by Robert Waldinger (2016), and put relationship as the main factor of good quality of life, than we can say that in this study we found that people with dementia in Lithuanian and Norwegian long-term nursing homes have a similar quality of life factor.
This study assessed objective factors of quality of life for people with dementia in Lithuanian and Norwegian nursing homes, coming to the conclusion that relationship is the most important factor for improving the quality of life.
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PRACTICAL RECOMENDATION
1. In this scientific research we discover that person with dementia, who live in nursing home should have group therapy for improving their quality of relationship with other residents;
2. For independence in daily living, people with dementia should have individual occupational therapy program for sensomotorical reactions
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