Association between Daily Activities and Behavioral and Psychological Symptoms of Dementia in Community-Dwelling Older Adults with Memory Complaints by Their Families

It is important and useful to consider information provided by family members about individuals with memory complaints’ instrumental activities of daily living (IADL). The purpose of this study was to clarify the characteristics and relevance of individuals with memory complaints’ IADL and behavioral and psychological symptoms of dementia (BPSD) assessed from the perspective of the family members using the Process Analysis of Daily Activity for Dementia and short version Dementia Behavior Disturbance scale. A self-administered questionnaire was sent to 2000 randomly selected members of Consumer’s Co-operative Kagoshima, and 621 responded. Of the returned responses, there were 159 participants who answered about individuals with memory complaints. The stepwise multiple regression analysis was used to examine the association between IADL and BPSD. The result showed that many IADL of the individuals with memory complaints were associated with BPSD of apathy, nocturnal wakefulness, and unwarranted accusations, adjusted for age, gender, and the observation list for early signs of dementia. In addition, each IADL was associated with BPSD of apathy, nocturnal wakefulness, and dresses inappropriately. Modifying lifestyle early on when families recognize these changes may help maintain and improve the long-term quality of life of the individuals with memory complaints and their family.


Introduction
Individuals suspected to have dementia may overestimate their functional abilities, and therefore it is important to consider the information provided by family members while diagnosing cases in the early stages of the disease [1]. There have been also reports that older adults with mild cognitive impairment (MCI) are less aware of changes in instrumental activities of daily living (IADL) due to

Participant
Consumer's Co-operative (CO-OP) is an autonomous association of consumers who volunteer to fulfill common needs and aspirations. CO-OP Kagoshima is a private enterprise with deep ties to the local community; it assists the residents with various activities, including conducting trips to stores, delivery, and other benefits that may support functioning. At CO-OP Kagoshima, many employees in stores and delivery businesses struggle to communicate with people with dementia or suspected dementia. In December 2018, a self-administered questionnaire was sent to 2000 randomly selected members of CO-OP Kagoshima who were 60 years old and over. We received 621 responses (recovery rate: 31%). The questionnaire included an enclosed reply envelope; thus, the responses were collected via mail. The survey period was from December 2018 to January 2019. Of the returned responses, there were 159 participants (individuals with memory complaints' family) who answered about individuals with memory complaints. The individuals with memory complaints in this study were the participants' family, and who were worried about memory complaints. In addition, the participants answered yes to the question "Is there any family member who worried about memory complaints and feel inconveniences in life?".

Procedure
The participants answered questions related to the following regarding the individuals with memory complaints: 1. characteristics of individuals with memory complaints, 2. IADL-8 performance of PADA-D (ability to use the telephone, shopping, cooking, housekeeping, use modes of transportation, laundry, managing finances, managing medication), 3. the short version of the 28-item Dementia Behavior Disturbance scale (DBD13) and 4. observation list for early signs of dementia (OLD).

Characteristics of Individuals with Memory Complaints
Characteristics of individuals with memory complaints data were collected in the questionnaire. Items assessed for age, gender, residence, living situation (living alone or with family, number of cohabitants), level of care needed (the Japanese long-term care insurance: LTCI) [28,29], and work status (working or not working). Other items assessed feeling of health (very good, good, bad, or very bad) as seen by the participants (objective), degree of pain, and hobby involvement (or hobbies).

PADA-D
We used PADA-D to evaluate the IADL of the individuals with memory complaints. PADA-D can divide the performance of daily living activities by those with cognitive decline into processes and analyze ADL in detail. Five occupational therapists and two dementia specialists collaborated to determine the processes and actions that make up the process (actions) to be included from the Physical Self-Maintenance Scale and Lawton IADL scale. The PADA-D consists of a total of 14 activity performances (6 basic ADL performances and 8 IADL performances). Each activity performance is divided into five processes and three actions ( Table 1). As an example, Table 2 demonstrates how "Ability to use the telephone" is divided into processes and actions. Tables S1-S7 show processes and actions of the other IADL performance. In PADA-D, activities' performances are arranged in a time series from the beginning to the end of an action, and it is possible to clearly indicate which process is impaired. The examiner judges the actions by "doing (YES)" and "not doing (NO)," granting points for "doing (YES)." Three points are available for 1 process, 15 points for 1 performance, and a total of 210 points for the 14 performances. The final scale with the items that were selected had high internal consistency and criterion validity (Cronbach's α = 0.96) [30]   Enter the score for each process in the score column after checking "YES" or "NO" for the three actions. We changed some words in the PADA-D we developed.

DBD13
We used the DBD13 to evaluate BPSD of the individuals with memory complaints. The DBD13 was created in Japan as a short version of the DBD [31] for easy evaluation of BPSD in the clinical scene. Thirteen items with a high frequency of appearance and large change due to intervention were extracted, and these have an extremely significant correlation (r = 0.96, p < 0.0001) with the DBD. In addition, the DBD13 was shown to be reliable and valid [32]. We rated them on a five-point scale, from 0 (not at all) to 4 (always). The higher the total score of the DBD 13, the more severe the obstacle, and the total score is 52 points.

OLD
We used the OLD to understand the initial symptoms of dementia, such as memory complaints. The OLD is an evaluation of an observation formula consisting of 12 items that are likely to appear early in AD. We evaluated them on a two-point scale, 1 (yes) or 2 (no). If more than four items are "yes", dementia is suspected. The OLD was shown to be reliable and valid [33].

Statistical Analysis
Once data were gathered, totaled, and averaged, characteristics of individuals with memory complaints were considered. We calculated the appearance rate of items in the DBD13 (the percentage of respondents who answered "sometimes", "frequently", or "always"). Next, the multiple regression analysis was performed after checking data with a normal distribution using the Shapiro-Wilk test. If a normal distribution was not confirmed, the Durbin-Watson test was performed to confirm the normality of the residuals. The stepwise multiple regression analysis was used to examine the association between living activities and BPSD. The dependent variable was PADA-D total score, the independent variables were item scores of the DBD13, and the covariates were age, gender, and OLD total score. Finally, the stepwise multiple regression analysis was used to examine in detail which items of BPSD were related to daily activities. The dependent variables were each total score of PADA-D 8 IADL performance, the independent variables were item scores of the DBD13, and the covariates were age, gender, and OLD total score. If answers were missing, they were treated as missing values. All statistical analyses were performed using IBM SPSS Statistics ver25.0, and the significance level was set at 5% or 1%. Table 3 shows the characteristics of persons concerned. The average age was 84.4±8.8 years old. They were mostly women (62.3%), 66% of whom lived with family. The average PADA-D total score was 55.8 ± 40.9 points, the average OLD total score was 6.4 ± 4.1 points, and the median DBD 13 total score was 14.0 points. The appearance rates of sub-items in the DBD13 were No1. "Ask the same question repeatedly" (79.7%), No2. "Loses, misplaces, or hides things" (65.1%), No6. "Sleeps excessively during the day" (60.3%), and No3. "Lack of interest in daily activities" (58.3%) in descending order. Other features were as follows: 55% looked healthy. The median level of care needed (LTCI) was Requiring Support 2 (a condition in which the ability to perform IADL was slightly reduced and some support was needed to maintain and improve functions). A total of 88% had no work, 66% had objective pain, and 31% had hobbies.  Table 4 shows the results of the stepwise multiple regression analysis of PADA-D total score and DBD13 sub-item score. PADA-D total score was associated with No3. "Lack of interest in daily activities" (β = −0.262, p = 0.007), No4. "Wake up at night for no obvious reason" (β = −0.277, p = 0.003), and No5. "Makes unwarranted accusations" (β = 0.193, p = 0.017) in the DBD13.  Table 5 shows the results of the stepwise multiple regression analysis of each total score of PADA-D 8 IADL performance and DBD13 sub-item score. Many of the IADL were associated with multiple BPSD such as apathy, nocturnal wakefulness, and dresses inappropriately.

Cooking
This was associated with No4. "Wake up at night for no obvious reason" (β = −0.29, p = 0.001) in the DBD13.

Housekeeping
This was associated with No4. "Wake up at night for no obvious reason" (β = −0.29, p = 0.001) in the DBD13.

Discussions
In this study, we investigated the association between IADL ability and BPSD in individuals experiencing memory complaints, from their family members' perspective, by collecting detailed information about the daily activities of community-dwelling older adults belonging to CO-OP Kagoshima. We found that the daily activities of the individuals with memory complaints were associated with BPSD such as apathy, nocturnal wakefulness, and unwarranted accusations. Additionally, each IADL was associated with age and BPSD such as apathy, nocturnal wakefulness, and dresses inappropriately.
The individuals with memory complaints included in this study were aged over 80 years, the majority of them were female, and about half of them lived with someone else. Additionally, their ability to perform IADL was slightly low according to their level of care needed (Requiring Support 2), indicating that they needed some kind of support. Further, several of them experienced objective pain, muscle weakness, and hearing loss. The average total OLD scores suggested that some of them may have had early dementia. Further, their median DBD13 total score indicated that some of them may have experienced BPSD symptoms such as memory loss, losing items, sleeps excessively during the day, and apathy. We found that family members noticed memory changes and the emergence of BPSD.
According to previous studies on IADL and BPSD reported by family members of AD patients, the Functional Activities Questionnaire (FAQ) positively correlated with all items, expect for one (depression), in the Neuropsychiatric Inventory (NPI) [13]. Additionally, sleep disorders (nocturnal wakefulness) in AD patients were highly associated with anxiety levels (OR2.1) and ADL disorder (OR1.6) [12]. Apathy for normal and MCI participants was moderately associated with IADL [25]. Vascular dementia (VaD) patients' level of apathy has also been reported as a predictor of BADL/IADL performance [34]. BPSD, such as depression, apathy, agitation, irritability, disinhibition, and anxiety, are also seen in older adults with cognitive impairment and no dementia (CIND), and these symptoms are reported to be associated with functional limitations in basic ADL and IADL [23]. In individuals with MCI, this suggests that changes in cognitive function may affect daily activity, and that depression and apathy may have a strong effect on everyday function [14]. As different scales are used to assess daily activities and BPSD, it is difficult to compare the present results with those of previous studies. However, the present finding of an association of IADL with apathy, nocturnal wakefulness, and unwarranted accusations is in line with the findings of previous studies mentioned above. For example, apathy disrupts lifestyle habits and affects overall life, including health and hygiene, and sleep disorders can hinder the execution of daily activities at appropriate times. Additionally, unwarranted accusations could make interpersonal relationships difficult and could lead to caregivers' burden. These findings suggest a bidirectional association between IADL and BPSD before the onset.
Next, we examined the association between eight IADL and BPSD individually. Each ADL was associated with multiple BPSD, and most were associated with apathy, nocturnal wakefulness, and dresses inappropriately. This finding confirmed that BPSD may be linked to impaired IADL ability. Additionally, we clarified that shopping, cooking, housekeeping, laundry, managing finances, and managing medication were related to aging. We confirmed that these factors cause a decline in IADL ability.
For instance, "Laundry" in the PADA-D comprises the following five processes: "Put the laundry in the washing machine," "Start the washing machine," "Operate the dryer or find another effective means to dry the laundry," "Take in and fold the laundry," and "Put the clothes in the chest/closet." The present findings revealed that "Laundry" was significantly associated with nocturnal wakefulness and unwarranted accusations. Nocturnal wakefulness may lead to reduced physical activity during the day [35] and circadian rhythm disorders [36], which may delay and impair the ability to dry and retrieve laundry. Additionally, unwarranted accusations could be thought of as a manifestation of stress in not being able to do what was previously easy [5]. It is possible that the motivation to carry out a daily activity such as laundry may decrease.
Similarly, "Ability to use the telephone" comprises the following five processes: "Call others," "Talk on the phone," "Hang up the phone," "Notice the phone ring," and" Answer and talk on the phone." The present findings revealed that "Ability to use the telephone" was significantly associated with apathy, nocturnal wakefulness, dresses inappropriately, and hoarding things. Apathy was strongly associated with IADL in MCI patients [37], and it may interfere with the act of answering or getting the phone. Additionally, a previous study reported that hoarding things implied the presence of memory complaints [5]. This suggests that memory decline may lead to difficulties with memorizing a message or responding to conversations with callers.
The present study has several limitations. First, we did not collect information on individuals with memory complaints' medical history of MCI or dementia. Based on the OLD results and background information, several of them could be inferred to be at the SMC or MCI stage. However, we cannot be sure. Second, we did not collect the caregivers' background information. There may have been biases regarding their care recipients, but this was unclear because we did not collect information on the association between the caregivers and care recipients. Third, it may be difficult to generalize the findings given that the participants were members of CO-OP Kagoshima, who are more aware of health issues as compared to the general population. Forth, the recovery rate in this study was 31%. Some studies were investigating with a recovery rate of 30−40% for community-dwelling older adults [38,39]. The recovery rate of this study is considered to be rather low, so we will consider a methodology to increase the recovery rate in future studies. Finally, the fact that the participants' educational background was not investigated is one of the defects of this study. This is significant as a low level of education has been reported to be a risk factor for MCI and AD [40].
Despite these limitations, the results of this study indicate that family members are aware of individuals with memory complaints' decline in IADL abilities and BPSD, which are likely to appear in MCI and the early stages of dementia. Accordingly, the implementation of interventions to modify the lifestyle of such individuals early, specifically when families recognize these changes, may help maintain and improve the long-term quality of life of care recipients and their family. Furthermore, this awareness needs to be taken into consideration during early medical consultations and appropriate support should be provided.

Conclusions
This study showed that the family members were well aware of individuals with memory complaints' IADL and BPSD. Further, the results revealed that many of IADL were associated with multiple BPSD, particularly apathy and nocturnal wakefulness. We consider that investigating IADL and BPAD from a family who can observe the individuals with memory complaints in detail by a specific evaluation (like PADA-D) could help in accurately understanding the behavioral changes of them. In addition, bidirectional intervention of IADL and BPSD such as apathy and nocturnal wakefulness from the time the family notices behavioral changes may prevent progression to MCI and dementia and reduce the caregivers' burden.