Abstract
Some new outpatients with mild cognitive impairment (MCI) or Alzheimer’s disease (AD) do not regularly attend treatment appointments at memory clinics. To explore factors related to non-regular attendance, we divided new outpatients according to regular or non-regular attendance during the first 6 months of treatment and analyzed the relationship between individual patient factors and attendance. Approximately half of patients living alone did not regularly attend appointments. Living with family and longer duration of school education were significantly associated with regular attendance. Patients with mild or moderate AD attended appointments more regularly than patients with MCI or moderate-to-severe AD. Patients in Kyoto City had significantly better cognitive function than patients in satellite cities, and there were a significantly higher proportion of patients with MCI or AD at first visit in Kyoto City. Living arrangements and duration of education are important patient factors to consider to promote regular attendance at treatment appointments.
• Patients with mild or moderate AD attended appointments more regularly than patients with MCI or moderate-to-severe AD. • Forty-seven percent of patients who lived alone did not regularly attend their scheduled monthly appointments at memory clinics during the first 6 months of treatment. • Living with family and longer duration of education were significantly associated with regular attendance.
• Patients with MCI and moderate-to-severe AD should receive more support to maintain regular visits than those with mild or moderate AD. • Education about AD could help encourage patients with early cognitive impairment, especially those in satellite cities, to visit memory clinics and regularly attend appointments.What this paper adds
Applications of study findings
Introduction
Japan has one of the highest life expectancy rates in the world, and an increasing number of older people are living with dementia (Nakanishi & Nakashima, 2014). A gradually increasing number of older people are also living alone. Approximately 30% of people with dementia are reported to be living alone in the community (Nourhashemi et al., 2005; Soto et al., 2015).
Alzheimer’s disease (AD) is the most common cognitive disease of aging, and early diagnosis and treatment are important because it can progress at an accelerating rate (Crous-Bou et al., 2017; Mendiondo et al., 2000). The stage between normal aging and dementia is known as mild cognitive impairment (MCI) and is characterized by memory loss and other symptoms. Amnestic MCI is believed to precede the onset of AD, with around 5%–10% of patients with MCI every year going on to develop AD (Flicker et al., 1991; Mitchell & Shiri-Feshki, 2009; Petersen et al., 1999).
People with MCI or AD can benefit from intervention to slow disease progression, and yet they may find it difficult to attend memory clinic appointments regularly on their own because of their cognitive impairment, such as memory disturbance and disorientation. They may, for example, forget an appointment or forget their way to the clinic. These cognitive difficulties can create anxiety that may cause behavioral and psychological symptoms of dementia (BPSD), which can place a heavy burden on families (Haupt et al., 2000). Therefore, keeping regular treatment appointments is important, given that AD can progress at an accelerating rate if regular appointments are not kept (Mendiondo et al., 2000).
In this study, we investigated whether individual factors of patients with MCI or AD affected the regularity of their attendance at scheduled outpatient appointments at memory clinics over an initial 6-month treatment period. We hypothesized that new outpatients who did not attend regularly would tend to have advanced AD and would live alone. We also hypothesized that patients living in a large metropolitan area would visit memory clinics at an earlier stage of cognitive impairment than patients in smaller satellite cities.
Methods
Participants
A total of 779 new outpatients visited five outpatient memory clinics, based at neurological departments in hospital, between May 2016 and October 2021. Following initial assessment, we excluded 53 patients who did not have cognitive disease and 101 patients who had cognitive disease other than MCI or AD. We also excluded 28 patients who were not cooperative and whose cognitive function could not be assessed at the first visit using the Hasegawa Dementia Scale-Revised (HDS-R) and Mini–Mental State Examination (MMSE) (Folstein et al., 1975; Katoh et al., 1991). The HDS-R is very useful for regular monitoring of cognitive function at busy memory clinics because each examination takes around 10 minutes and does not require high level interviewing skills. A previous study found the HDS-R superior to the MMSE as an AD screening instrument (Jeong et al., 2007). We further excluded 30 patients who were living in care homes and unable to walk unassisted in order to avoid the potential influence of having a physical disability and living outside the home environment on the results. Finally, we excluded 17 patients who died or moved within 6 months of their first visit. This left 550 patients with AD or MCI who lived at home in the community and could walk unassisted to participate in this study.
AD was diagnosed according to the criteria of the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) and the National Institute on Aging-Alzheimer’s Association (NIA-AA) (American Psychiatric Association, 2013; McKhann et al., 2011). MCI was diagnosed according to the criteria of Petersen et al. (Petersen et al., 1999).
Memory Clinic Operation
We encourage family members or other caregivers to accompany patients on their visits to a memory clinic so that they can offer the patient support and provide information to help us make a diagnosis. We offer the families medical information about AD. We examine and diagnose the patients at the memory clinics and may prescribe drugs. We typically see patients once a month.
Attendance
We retrospectively divided the 550 patients into two groups depending on whether they attended all monthly scheduled appointments at the memory clinic for 6 months after their first visit (regular group) or did not attend all appointments (non-regular group). We compared mean age, sex, duration of school education, HDS-R and MMSE scores at first visit, and household size (1, 2, or ≥3 household members, where 1 indicates the patient living alone) between the two attendance groups.
Memory Clinic Location
To examine the potential effect of clinic location on regular attendance at appointments, we divided the clinics according to size of the city in which they were located: in Kyoto City, which is a metropolis with a population of more than 1.4 million, and in nearby satellite cites, which have populations of 37,000–340,000. We then compared clinic location between the two attendance groups.
Severity of Cognitive Impairment
We classified patients into three groups according to AD severity based on their HDS-R score and their MMSE score separately. Then, by adding the MCI group, we classified the patients into four groups in accordance with previous studies (Honjo et al., 2020, 2022). The groups were MCI; mild AD (HDS-R >18 and MMSE >20); moderate AD (HDS-R 10–18 and MMSE 16–20); and moderate-to-severe AD (HDS-R <10 and MMSE <16). We then compared attendance among the groups.
Statistical Analysis
Among the categorical variables, HDS-R score and MMSE score were assessed separately. Fisher’s exact test was used to determine the association between sex and the proportion of patients with MCI or AD. Fisher’s exact test was also used to determine the association of severity of cognitive impairment with regular attendance. The continuous variables were normally distributed. Student’s t-test was used to determine differences in age, duration of school education, household size, HDS-R score at first visit, and MMSE score at first visit according to clinic location.
Logistic regression analysis was performed to determine the association of age, sex, duration of school education, household size, clinic location, HDS-R score at first visit, and MMSE score at first visit with regular attendance. HDS-R score and MMSE score were assessed separately. Logistic regression analysis was also performed to determine the association of age, sex, duration of school education, household size, HDS-R score at first visit, and MMSE score at first visit according to clinic location. Again, HDS-R score and MMSE score were assessed separately. Statistical analysis was performed using JMP Pro 12 Statistical Discovery (SAS Institute Inc, Cary, NC). Differences were considered significant at p < .05.
Results
Patient Characteristics
Association between patient characteristics and attendance.
Notes. HDS-R: Hasegawa Dementia Scale-Revised; MMSE: Mini–Mental State Examination. Kyoto City is a metropolis with a population of >1.4 million, and the nearby satellite cites have populations in the range of 37,000–340,000. Data are presented as the mean ± standard deviation except for sex and clinic location.
Individual Patient Characteristics According to Attendance
Factors associated with regular attendance.
Notes. HDS-R: Hasegawa Dementia Scale-Revised; MMSE: Mini–Mental State Examination; CI: confidence interval. Logistic regression analysis was used to assess differences. The values were obtained using statistically corrected data. Among the categories, HDS-R score and MMSE score were assessed separately.
Severity of Cognitive Impairment According to Attendance
Patient attendance status related to AD stages.
Notes. AD; Alzheimer’s disease; MCI; mild cognitive dysfunction; HDS-R; Hasegawa Dementia Scale-Revised; MMSE; Mini–Mental State Examination. We initially classified the AD patients into three groups in accordance with previous studies: mild AD (HDS-R >18; MMSE >20), moderate AD (HDS-R 10–18; MMSE 16–20), or moderate-to-severe AD (HDS-R <10; MMSE <16). Fisher’s exact test was used to assess the difference.
Severity of Cognitive Impairment According to Clinic Location
Patient characteristics according to clinic location.
Notes. AD: Alzheimer’s disease; MCI: mild cognitive dysfunction; HDS-R: Hasegawa Dementia Scale-Revised; MMSE: Mini–Mental State Examination. Kyoto City is a metropolis with a population of more than 1.4 million, and nearby satellite cites have populations of 37,000–340,000. The data are presented as the mean ± standard deviation except for Sex and the proportion of patients with MCI or AD. p-Values were determined using the Student’s t-test. Fisher’s exact test was used to assess the difference in sex and the proportion of patients with MCI or AD.
Factors associated with clinic location.
Notes. HDS-R: Hasegawa Dementia Scale-Revised; MMSE: Mini–Mental State Examination; CI: Confidence interval. Logistic regression analysis was used to assess differences. The values were obtained using statistically corrected for the difference of age, household members, school education period, and sex. Among the categories, HDS-R score and MMSE score were assessed separately.
Discussion
The main findings in our study were (1) living with family was most significantly associated with patients’ regular attendance at a memory clinic during the first 6 months of treatment, with 47% of patients who were living alone not making regular visits; (2) patients with MCI or moderate-to-severe AD attended less regularly than those with mild or moderate AD; (3) compared with patients living in satellite cities, those living in Kyoto City had better cognitive function and there was also a significantly higher proportion of patients diagnosed with MCI or AD at first visit; and (4) longer duration of education was significantly associated with regular attendance.
There are two possible reasons for the significant association of longer duration of school education with regular attendance. First, people with longer duration of education might know that early diagnosis and early treatment are important because AD is a progressive disease, and likely appreciate that regular treatment is fundamental to helping slow progression. Second, socioeconomic status might affect attendance. Generally, more highly educated people are economically advantaged and can manage the transportation expenses for clinic visits.
We had hypothesized that patients with advanced AD would tend to miss regular treatment appointments because they would be less likely to understand why they should attend memory clinic appointments. In cases where patients strongly resist attending, or exhibit violent BPSD, caregivers may not be able to bring them to appointments. It is possible that BPSD could affect the result. Generally, BPSD appears in advanced AD stage, but MCI also tended to miss regular appointments. And there was no significant difference of cognitive functions between the regular attendance and non-regular attendance groups (Table 1). It is not clear that BPSD affected the result.
When we classified patients according to the severity of cognitive impairment, as determined by their HDS-R and MMSE scores at first visit in accordance with previous studies (Honjo et al., 2020, 2022), our hypothesis was partly supported. Patients with moderate-to-severe AD and those with MCI attended treatment appointments less regularly than those with mild or moderate AD.
We were surprised that patients with MCI also tended to miss regular appointments. The reason for this is unclear, but perhaps because the symptoms of MCI do not seriously disturb daily life for patients and their families, they do not feel a sense of crisis. Thus, families may not attach importance to a patient with MCI forgetting an appointment. Families may also not appreciate the condition fully unless the patient exhibits more serious BPSD. Memory clinic staff should carefully monitor patients with MCI, as well as those with moderate-to-severe AD, in order to encourage regular attendance at treatment appointments.
We also hypothesized that patients with cognitive disease living in Kyoto City would visit memory clinics at an earlier stage of cognitive impairment than patients living in satellite cities. This hypothesis was supported in that we found better cognitive function among patients living in the Kyoto City than those living in satellite cities. We also found a significantly higher proportion of patients who were diagnosed with MCI or AD among patients living in the Kyoto City. AD-specific symptoms sometimes prevent people from visiting memory clinics. They and their family members often attribute such symptoms to normal aging or do not recognize these symptoms. Also, individuals with AD often offer alternative explanations for such symptoms, which can prevent family members from recognizing the symptoms as characteristic of AD (Maki et al., 2012; Yang et al., 2016). It is possible that awareness-raising and educational activities about AD may have been more active in Kyoto City, leading the results found in this study. Furthermore, there are many memory clinics in Kyoto City, enabling patients to visit nearby memory clinics easily. Further study is warranted to examine the potential reasons for these findings.
In this study, we investigated patients attending outpatient memory clinics operated by neurology departments at hospitals in Japan. Our findings may not be generalizable to other clinical settings. Further research should therefore be examined in other areas.
In summary, living with family members is a key factor in maintaining regular medical care for patients with cognitive disease. To help promote regular attendance at treatment appointments, patients with MCI or AD should be asked about their living arrangements and duration of education at the first visit and support should especially be given to encourage patients with MCI or moderate-to-severe AD to keep their regular appointments. Awareness-raising and education about AD could help encourage patients to visit a memory clinic in the early stage of AD and to attend regular appointments, especially those living in satellite cities.
Supplemental Material
Supplemental Material - Living Arrangements and Education Duration Associated With Memory Clinic Attendance in Alzheimer’s Disease
Supplemental Material for Living Arrangements and Education Duration Associated With Memory Clinic Attendance in Alzheimer’s Disease by Yasuyuki Honjo, Ippei Kawasaki, Kuniaki Nagai, Shun Harada, and Noriyuki Ogawa in Journal of Applied Gerontology
Footnotes
Acknowledgments
We thank the participating patients and staff of Kyoto Miniren Asukai Hospital, Biwako-Yoikuin Hospital, Kyoto-Kaisei Hospital, Seika Town National Health Insurance Hospital, and Kyoto Narabigaoka Hospital for their cooperation with this study.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Institutional Review Board
This study protocol was reviewed and approved by the Ethics Committee of Kyoto Tachibana University (Approval Number 21-54) and the local ethics committees of each participating hospital. The study conforms to the provisions of the World Medical Association Declaration of Helsinki. Informed consent was obtained from participants (or their families) to participate in the study, and patient anonymity was preserved.
Supplemental Material
Supplemental material for this article is available online.
References
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