Characteristics of care methods for daily life disabilities in Alzheimer's type dementia that respect autonomy and independence

Abstract Aim To clarify the characteristics of appropriate care methods for people with daily life disabilities due to Alzheimer's type dementia. Design A cross‐sectional survey study. Methods A survey was implemented targeting 2,156 advanced care practitioners for dementia. The postal, self‐administered anonymous questionnaire was rated on a 4‐point Likert scale to assess the benefits of care for daily life disabilities depending on severity. We conducted factor analysis to determine characteristics of the appropriate care. Results There were 568 valid responses, a valid response rate of 26.3%. The characteristics found were “Simplicity of necessities” and “Communication using verbal language on what should be done next” for mild cases; “Opportunities for completion of a task are provided with verbal communication,” “Marks” and “Arrange the environment with verbal communication” for moderate cases; and “Explain the process in the order of each individual action,” “Prevent non‐starts and interruptions” and “Confirm intention” for severe cases.


| INTRODUC TI ON
The number of elderly people with dementia in Japan was estimated to be 4.62 million in 2012, with the prevalence of dementia among older people estimated to be around 15% (Ikejima et al., 2012;Ministry of Health, Labour, & Welfare, 2013). According to a nationwide survey conducted from April 2011-March 2013, Alzheimer's type dementia is the most common primary disease of dementia, accounting for 67.6% (Ministry of Health, Labour, & Welfare, 2013).

A longitudinal study in the towns of Hisayama-cho in Fukuoka
Prefecture and Daisen-cho in Tottori Prefecture has ascertained that the prevalence of Alzheimer's type dementia is increasing over time (Sekita et al., 2010;Wakutani et al., 2007).
Based on this situation in Japan, a community-based integrated support and service provision system is expected to be constructed and operational by 2025, to enable elderly people to continue living in familiar communities and on their own terms until the end of their lives, whenever possible. This strategy is based on the aim of supporting independent living and retaining the dignity of older people (Ministry of Health, Labour, & Welfare, 2012). In 2015, the New Orange Plan was revealed, which includes seven policies regarding dementia such as the provision of timely and appropriate medical treatment and nursing care suited to the condition of the dementia; this policy was enacted in anticipation that the number of elderly people with dementia would reach approximately 7 million by 2025 (Ministry of Health, Labour, & Welfare, 2015).

| Background
Dementia care in Japan is based on person-centred care advocated by Kidwood (1997). The aim has been to improve the quality of dementia care through studies on cognitive impairment and behavioural and psychological symptoms of dementia (BPSD), which are predominantly characteristics of Alzheimer's type dementia and by developing nationwide public training on dementia medical treatment and nursing care (Ministry of Health, Labour, & Welfare, 2006. However, previously in Japan, long-term care facilities, day services and geriatric hospitals used by many people with dementia have referenced indices such as the Barthel Index (Mahoney & Barthel, 1965) regarding the activities of daily living (ADL) for people with dementia. These indices only employ a phased assessment, classifying the person as independent, or requiring partial care or total care, without specifying what each of these types of care entails. Thus, traditional methods of care have been employed by individual caregivers and care facilities. Methods for assessing ADL and instrumental activities of daily living (IADL) of older people, such as the Physical Self-Maintenance Scale (Lawton & Brody, 1969) and Instrumental ADL Scale (Lawton & Brody, 1969), have been developed; however, these scales have not been fully used for planning care in Japan. A systematic review by Prizer and Zimmerman focused on dressing, toileting and meals among the ADL of people with dementia and clarified progressive support methods and associated evidence for these methods (Prizer & Zimmerman, 2018). However, this study did not clarify support methods and associated evidence for ADL other than dressing, toileting and meals.
Reports show that it is important to appropriately ascertain deficits in executive function (executive function disorders) in cognitive impairment, to support execution of daily tasks, including ADL, in the daily lives of people with dementia (Nakaaki & Sato, 2015).
Execution function is a series of cognitive functions to facilitate decision-making, planning, execution and modification, which are essential for humans to behave with purpose in the environment (Lezak, Howieson, Loring, Hannay, & Fischer, 2004;Walsh, 1991).
However, disorders other than execution function disorders also make it difficult for people to execute various daily tasks by themselves, including attention disorders, agnosia and apraxia. Asada (2015) regards daily tasks that are difficult to execute due to the effect of dementia as daily life.
However, the results of assessing people with dementia using these ratings are not used for care, and as mentioned above, currently assistance for ADL is implemented based on categorizing the person as independent or requiring partial care or total care. In addition, there has been no clarification of daily life disabilities caused by cognitive impairment, including execution function disorders, nor specific methods for providing care to support daily life disabilities.

The Diagnostic and Statistical Manual of Mental Disorders
(DSM-5) describes execution function and complex attention as different cognitive domains (American Psychiatric Association, 2013); however, in reality, maintenance, selection and distribution of attention are necessary conditions for establishing execution functions (Nakaaki & Sato, 2015). Oikawa, Oguri, Sato, and Imamura (2006) also claim that the cognitive functions of maintaining attention and distractibility, retaining information, recalling past information and determining time and location are required simultaneously when a person encounters a situation that requires executive function for ADL. Therefore, given that it is impossible to correlate a single cause of daily life disability with a single cognitive impairment, it is also impossible to gain an appropriate understanding of daily life disability and to provide support using assessment that focusses on individual execution function disorders in people with dementia.
Thus, it is vital to clarify the specifics of the kind of care that should be provided for daily life disability depending on specific cognitive impairment, including execution function disorders, to support the autonomy and independence of people with dementia, focusing on Alzheimer's type dementia, to enable people to live in familiar areas and on their own terms until the end of their life whenever possible.

| Aim
The aim of this study was to clarify characteristics of the appropriate care for Alzheimer's type dementia patients' daily life disabilities. Such care on the part of advanced care practitioners in medical or care facilities or home care services (hereinafter referred to as advanced practitioners) must respect patients' autonomy and independence and incorporate advanced knowledge and techniques in dementia care in line with the severity of patients' Alzheimer's type dementia.
This study investigated the characteristics of dementia care provided by advanced care practitioners for persons with mild, moderate and severe cognitive impairment due to Alzheimer's type dementia when they are willing to undertake ADL.
In this study, advanced care practitioners for dementia were defined as nurse specialists and certified nurses, including dementia care leaders, certified nurse specialists in gerontological nursing and certified nurses in dementia nursing. The reason for this definition is firstly that training and education of dementia care leaders was started in 2000, to train them to plan, operate and guide dementia care practitioner training and dementia care practice leader training (Onodera, 2007;Suwa, 2010). Employing dementia care leaders is one of the requirements for determining whether additional specialized dementia care is necessary (Ministry of Health, Labour, & Welfare, 2009); thus, long-term care fees for businesses implementing advanced dementia care practice are influenced by this factor.
The Japanese Nursing Association has also started a nurse specialist system that fulfils the role of practice, consultation, coordination, ethics coordination, education and research and a certified nurse system that fulfils the role of practice, guidance and consultation (Japanese Nursing Association, 2016a,2016b. These gerontological certified nurse specialists and certified nurses in dementia nursing are now developing advanced dementia nursing activities.

| Design
This study employs a cross-sectional research design.

| Sample/Participants
In this study, we wanted to target professions highly specialized in dementia care, with experience in care for people with dementia living at home. Therefore, we targeted 2,156 nurses comprised of

| Survey implementation period
We implemented a postal self-administered anonymous survey from November 2014-January 2015. During this period, one reminder letter was sent to all recipients urging them to respond to the survey.

| Development of the questionnaire
Care methods were selected for daily life disabilities involving 19 daily tasks (go to target location, defecation, urination, hand washing, face washing, teeth brushing, eating meals, drinking, dressing, wearing shoes, undressing, bathing, transfers, lying down, applying makeup, shaving, cleaning dentures, managing medication and expressing intent), which were regarded as effective for supporting autonomy and independence by the research team and were considered to serve as hints applicable to care for a variety of daily life disabilities. This information was selected from previous research on good practices of dementia care to support autonomy and independence in line with the daily life disabilities in Alzheimer's type dementia in people cared for at home or in long-term care facilities, whose cognitive impairment is at functional assessment staging (FAST) stage 3 (mild), FAST stage 4 (moderate) or FAST stage 5-7 (severe) based on Functional Assessment Staging (Japan Visiting Nursing Foundation, 2003;Ministry of Health, Labour, & Welfare, 2013;Reisberg, 1988 We developed a self-administered anonymous survey about the extent of benefits of care for each level of severity of cognitive impairment that enables autonomy and independence for people with daily life disabilities in Alzheimer's type dementia using a 4-point Likert scale: 4 = Beneficial, 3 = Somewhat beneficial, 2 = Not very beneficial, 1 = Not beneficial. In this context, beneficial care is care that allows even patients with daily life disabilities due to Alzheimer's type dementia to proactively engage in daily activities of their own free will as much as possible.

| Validity and reliability/rigour
To increase the reliability, validity and rigour of the survey, first, using the developed survey form, we requested a pre-test from two nurses, one occupational therapist and one certified care worker both of whom had been carrying out dementia care for 20 years or longer. The results revealed that there were no problems with the survey form. However, because it was essential that subjects accurately understood the severity of cognitive impairment due to Alzheimer's type dementia, FAST was enclosed with the questionnaire to enable the respondent to reference it while answering the questions. Additionally, the respondents were asked to respond to the questionnaire from the viewpoint of whether the care would be beneficial to many people with Alzheimer's type dementia for each category of severity, rather than based on the perspective of care for a particular person with Alzheimer's type dementia.

| Analysis
The subject attributes were summarized with descriptive statistics.
Exploratory factor analysis was implemented with the maximum likelihood method and promax rotation for each level of cognitive impairment severity using response data relating to the benefits of care for the 127 items of daily life disability. In this way, we hoped to clarify factors that comprise the benefits of care for daily life disability that respects the autonomy and independence of people with Alzheimer's type dementia.

| Ethics
Implementation of the survey was approved after review by the research ethics committee of the Japan Visiting Nursing Foundation.
Specifically, the aim of the research, strict protection of privacy and the voluntary nature of survey collaboration, was explained in writing and consent to participate in the survey was assumed by the respondent completing and returning the self-administered anonymous survey.

| Valid response rate
There were 568 valid responses from 2,156 advanced care practitioners for dementia, indicating a valid response rate of 26.3%.

| Subject attributes
The gender of the respondents was 76.1% female and 23.9% male (Table 1). The largest age group was respondents in their 40s, comprising 41.2%. There were multiple answers for respondents' qualifications; nurses comprised the largest group, accounting for 61.4%, followed by long-term care support specialists (44.9%) and care workers (33.8%). Qualifications as advanced care practitioners for dementia included dementia care leaders (45.8%), certified nurses in dementia nursing (30.8%), dementia care specialists (19.7%) and certified nurse in visiting nursing (16.9%) (from highest to lowest).
The most common affiliated facility was visiting nursing stations (17.1%), followed by general hospital wards (16.0%), long-term intensive care facilities for older people (12.5%) and group homes (12.1%).
The most common range of number of years' experience in dementia care was between 10-15 years, accounting for 38.6%.

| Characteristics of care that is beneficial
Factor analysis (promax rotation) was conducted to clarify factors that comprise the benefits of care common to various daily tasks using responses obtained with a 4-point Likert scale to determine the degree of benefit of care for those items to facilitate autonomy and independence of the 127 items of daily life disabilities.
Two factors were extracted (Table 2) for the usefulness of items with a factor loading of 0.4 or more as the components of benefits relating to care for people with daily life disabilities in Alzheimer's type dementia and mild cognitive impairment. The first factor was named "Simplicity of necessities: integrate the necessities for daily living in a simplified format," and the second factor was named "Communication using verbal language on what should be done next: speak to the person and inform them of what they should do next." Cronbach's α coefficient demonstrated internal consistency (0.843, 0.774, for the first and second factors, respectively), while the cumulative contribution ratio was 40.99%.
Three benefits were extracted relating to care for people with daily life disabilities in Alzheimer's type dementia and moderate cognitive impairment (Table 3). The first factor was named "Opportunities for completion of a task are provided with verbal communication: create opportunities to enable the person to complete the ADL by themselves," the second factor was named "Marks: place marks on the area or aspect of necessities for daily living that you want the person to focus on," and the third factor was named

| D ISCUSS I ON
Various types of dementia, including Alzheimer's type dementia, first manifest as generalized attention disorder, characterized by the inability to pay attention to necessary tasks, maintain attention and appropriately select and distribute attention (Japan Society of Neurology, 2017). Therefore, support for generalized attention disorder is beneficial care for daily life disabilities. The first factor could be described as care that makes it easier for a person with Alzheimer's type dementia to turn their attention to matters by arranging items required for daily life in a simplified format. Therefore, the first factor is support for generalized attention disorder in people with Alzheimer's type dementia.
Maintaining, selecting and distributing attention are necessary conditions for establishing execution function, which is essential for execution of daily tasks, including ADL (Nakaaki & Sato, 2015).
This means that once generalized attention disorder is supported with the first factor as the foundation, the second factor then supports the execution function disorder to progress through a series of steps. Execution function is formed from the four stages of decision-making: starting an action, planning an action, executing an action and making adjustments if an unexpected situation occurs (Lezak et al., 2004;Walsh, 1991). Execution function disorder manifests from the first stages of Alzheimer's type dementia in the same way as generalized attention disorder, but in people with Alzheimer's type dementia with mild cognitive impairment, phased support of instantaneous planning and execution is particularly beneficial for implementing individual daily tasks in ADL.
Furthermore, with the progression of generalized attention disorder and execution function disorder, it becomes increasingly difficult to have intention for each daily task and to plan and execute those tasks. Therefore, care that encourages verbal communication of actions required for daily tasks to a person with Alzheimer's type dementia who is still able to understand verbal communication is beneficial as care for people with daily life disabilities in Alzheimer's type dementia. This is listed in the first factor: "Opportunities for completion of a task are provided with verbal communication: create opportunities to enable the person to complete the ADL by themselves." However, language disorders manifest from the early stage of Alzheimer's type dementia (Japan Society of Neurology, 2017) and symptoms of the ageing process and diseases also tend to appear in the vision and hearing of older people. Therefore, use of verbal communication only may be inadequate when providing care to people with Alzheimer's type dementia with moderate cognitive impairment. Thus, attaching marks to necessities of daily living that are visually easy to understand and notice, as listed in the second factor, is considered to be a beneficial method of care. These methods have been devised to make people with dementia more easily aware of their environment. It is important for people with dementia, including Alzheimer's type dementia, to live in a supportive and therapeutic environment (Calkins, 2018;Chau et al., 2018 However, care using not only the first factor, "Explain the process in the order of each individual action: explain the order of actions that comprise one activity of daily life and specifically show those actions," but also the second factor, "Prevent non-starts and interruptions: devise techniques in advance to ensure activities of daily life are not non-started or interrupted," enables the person to execute ADL, which may also maintain or improve their self-esteem.
Furthermore, the third factor was "Confirm intention: slowly confirm the intentions of the person." The first and second factors were simply care methods to support a person with Alzheimer's type dementia with severe cognitive impairment to execute daily tasks themselves. However, in reality, as the cognitive impairment progresses, including execution function disorders and language disorders, many people with dementia become unable to smoothly indicate their intention to perform various daily tasks. It is easy to focus on the ability to consent to medical treatment, where people with dementia are assessed during medical treatment and care using assessment tools such as the Macarthur Competence Assessment Tool for Treatment (Grisso & Appelbaum, 1998) and Competency to Consent to Treatment Instrument (Marson, Ingram, Cody, & Harrell, 1995). However, when providing support to a person with Alzheimer's type dementia in these situations in a way that enables the person to retain their dignity, it is possible to check the intention of the person with dementia and obtain their consent regarding matters. This includes confirming that it is acceptable to start each daily task, continue the daily task, complete the daily task and use convenient daily necessities to execute daily tasks. These actions respect the intention of people with dementia even when they require assistance for all their daily tasks. The results of this study suggest that these practices are beneficial for maintaining the autonomy of a person with Alzheimer's type dementia when performing daily tasks.

| Research limitations and issues
This study used data obtained from advanced care practitioners for dementia on support for multiple people with daily life disabilities in Alzheimer's type dementia and their envisioned care, so it may not accurately reflect actual care used for daily life disabilities. Also, this study did not consider the relationship of various factors including the detailed cognitive impairment condition of a person with Alzheimer's type dementia, treatment status with anti-dementia drugs and onset status of BPSD.
It is essential to conduct a longitudinal study into people with daily life disabilities in Alzheimer's type dementia and the associated care, to undertake further investigation into the benefits of care from the perspective of specific daily life disabilities and care, to determine how to maintain or improve autonomy and independence and to ascertain whether such improvements are even possible. It is also important to assess self-care in ADL based on cognitive impairment, including execution function disorder and to develop care strategies that respect autonomy and independence. This will enable a method to move away from simply classifying care for ADL for people with dementia in Japan into independent, partial care and total care. Alzheimer's type dementia based on the severity of their condition implemented by advanced dementia care practitioners in Japan. The results of factor analysis extracted the characteristics of "Simplicity of necessities: integrate the necessities for daily living in a simplified format" and "Communication using verbal language on what should be done next:

| CON CLUS ION
speak to the person and inform them of what they should do next" relating to care for people with daily life disabilities in Alzheimer's type dementia and mild cognitive impairment. "Opportunities for completion of a task are provided with verbal communication: create opportunities to enable the person to complete the ADL by themselves," "Marks: place marks on the area or aspect of necessities for daily living that you want the person to focus on" and "Arrange the environment with verbal communication: speak to the person and arrange their living environment together" were clarified as characteristics relating to care for people with daily life disabilities in Alzheimer's type dementia and moderate cognitive impairment. "Explain the process in the order of each individual action: explain the order of actions that comprise one activity of daily life and specifically show those actions," "Prevent non-starts and interruptions: devise techniques in advance to ensure activities of daily life are not nonstarted or interrupted" and "Confirm intention: slowly confirm the intentions of the person" were listed as characteristics of care for people with Alzheimer's type dementia with severe cognitive impairment. Based on the aforementioned characteristics, it is important to courteously support daily tasks, including eating meals, bathing and toileting, to enable people with Alzheimer's type dementia to retain their dignity.

ACK N OWLED G EM ENTS
We would like to thank all participants who offered their cooperation and the Dementia Care Research/Training Center.

CO N FLI C T O F I NTE R E S T
No conflict of interest has been declared by the authors. When the person is unable to cut or divide their food into small pieces, cut their food after asking "shall I cut it into small pieces?" TA B L E 4 (Continued)