Daily life experiences of an older woman with Alzheimer's disease residing alone as recorded in her diaries

Abstract

Background

In Japan, the aging population is rapidly increasing, with more older persons residing alone. Among them, individuals with dementia face unique challenges in maintaining daily life and self-identity.

Objective

This study aimed to clarify what an older woman living with Alzheimer's disease, who resided alone, experienced in her daily life based on the diaries she kept.

Methods

The contents of 13 diary books belonging to Aki (a pseudonym), an older woman with dementia who lived alone at home, were quantitatively analyzed using KH Coder, and a co-occurrence network was created. In addition, qualitative content analysis of the diary contents was performed for each subgraph obtained from this network.

Results

Across all years, most days with entries had only 1 entry. However, as the years passed, the number of days with multiple entries increased. The co-occurrence network consisted of 8 subgraphs. According to the content in each subgraph, Aki experienced “sorrow and loneliness due to forgetfulness”. However, Aki made efforts such as “recording the current time,” “writing in a notebook to maintain my proper character”. The analyses also revealed her experience of trying to live positively, as reflected in statements such as “I will live positively even though my siblings passed away, leaving me all alone.”

Conclusions

Keeping a diary may have been an important means to complement her memory function and orientation, and to inspire motivation to live positively even after the loss of her family members, moreover as well as maintaining her self-esteem.

Keywords

Alzheimer's disease diary experience older woman residing alone

Introduction

In Japan, the rate of population aging is expected to reach 38.7% by 2070 due to the increasing population of those aged 65 years and older.¹ In particular, the number of older people residing alone has been increasing and is expected to reach 26.1% for men and 29.3% for women in 2050.² Moreover, the number of older people with dementia is predicted to approach 5.8 million in 2040.³ Based on these figures, providing support for older people who live alone at home, including those with dementia, is an urgent issue. In providing such support, it is important to respect the wishes of each individual.

In Japan, such efforts have focused on enhancing regional comprehensive care systems.⁴ For example, the Ministry of Health, Labour and Welfare has formulated the “Guidelines for Decision-making Support in Daily Life and Social Life of People with Dementia.”⁵ Additionally, to promote peace of mind for people with dementia and their families, the Japan Dementia Working Group issued a “Declaration of Hope to Live with Dementia” in 2018.⁶ This declaration includes the statement, “While communicating your thoughts and aspirations, you will find people who will be on your side, walking on the same path,” which emphasizes the importance of community members, including dementia care professionals, encouraging people with dementia to express their intentions and listening to what they want to convey.

Building on these previous dementia-related measures and policies, the “Basic Act on Dementia to Promote an Inclusive Society” went into effect in January 2024.⁷ This Basic Act stipulates principles such as “to enable all persons with dementia to be able to lead their lives as individuals with freedom to make their own choices, enjoying their fundamental human rights,” and “to provide good quality and appropriate healthcare and welfare services seamlessly, while fully respecting the wishes of those with dementia.” To realize these principles, the Act establishes basic policies including “promotion of public understanding of people with dementia” and “supporting decision-making and protecting the rights and interests of people with dementia.”

One way to obtain a deeper understanding of people with dementia may be to analyze their daily lives, intentions, attitudes, and emotions by reading what they have written. In 1994, U.S. President Ronald Reagan announced in a handwritten letter to the public that he was suffering from dementia.⁸ Just 3 years after his death in 2007, his edited diary, The Reagan Diaries,⁹ was published. An analysis of Reagan's speech manuscripts from 1980 to 1989 revealed signs of Alzheimer's disease between 1983 and 1988 based on decreased readability scores, increased use of pronouns, and frequent repetition.¹⁰ Berisha et al.¹¹ compared unscripted conversations at press conferences between President Reagan and President Bush (who did not have Alzheimer's disease) and found that Reagan used a lower number of unique words and a higher number of nonspecific nouns over time. According to Fins,¹² President Reagan's health status during his presidency can be understood through quantitative linguistic analysis, combined with methods from clinical ethics and literary criticism. As such, conducting a quantitative analysis of the vocabulary used in the letters and conversations of persons with dementia, including the frequency of and connections between words used, could help objectively understand their state of mental and physical functioning.

In another firsthand account, Christine Bryden, a pioneering dementia advocate from Australia, published a book about her own experiences after developing dementia.^13,14 In Japan, books have been published in which patients with early-onset dementia and families of people with dementia reflect on their experiences.^15,16

Diaries, in particular, are considered one of the most effective means of gaining a deeper understanding of human motives, inner thoughts, and emotions.^17,18 Records based on personal experience are concrete, create a feeling of immediacy, and can foster a new understanding.¹⁹ Therefore, the contents of diaries written by people with dementia may provide a new perspective on their daily life experiences and lead to a deeper understanding.

Previous studies on dementia-related diaries have often focused on those recorded by family caregivers. These studies revealed caregivers’ experiences and emotions, as well as the behavioral and cognitive challenges faced by persons with dementia,^18,20,21 suggesting that caregiver diaries may help supplement the assessment of dementia.²²

In addition to handwritten diaries, other methods used by persons with dementia to record experiences may include photos and videos.²³ Videos are considered more effective for remembering events than handwriting.^24,25 However, according to a literature review that compared different methods of diary recording, using diaries in any form can improve memory and promote communication with others for persons with dementia.²⁶ Handwriting a diary is considered beneficial for older persons with dementia because written records can help them identify changes in their writing ability and interpret their emotions and thoughts.

Among studies that analyzed diaries handwritten by older persons with dementia, one classified the diarist's thoughts into themes of “daily life,” “memory loss,” “family relationships,” and “caregiver relationships,” and qualitatively analyzed the content in chronological order. The authors reported that the diarist, becoming aware of her declining cognitive functioning, used diary writing as a coping mechanism and relied on writing about personal relationships to better understand them.²⁷ Saito analyzed the diary of his mother, who suffered from dementia, and found that she described changes in her life experiences, ways of thinking, and moods after developing dementia; he thus argued that it is important to provide support based on understanding the anxiety, loneliness, and embarrassment that persons with dementia feel.²⁸ These reports suggest that, by qualitatively analyzing handwritten diaries in this way, we may be able to better understand the subjective life experiences of older persons with dementia.

However, few studies have examined the life experiences of persons with dementia using both quantitative analysis of the words used in their diaries and qualitative analysis of the contents of their diaries. Therefore, in this study, we analyzed the diaries of an older woman residing alone with Alzheimer's disease using a mixed-methods approach, including both quantitative analysis of words and qualitative analysis of content, to gain a comprehensive and in-depth understanding of her daily life experiences.

Methods

Study design

This study used a mixed-methods approach, combining quantitative analysis through text mining and qualitative content analysis. Specifically, we used an explanatory sequential design, a commonly used mixed-methods approach. First, statistical data were collected and analyzed quantitatively to examine overall trends and relationships. We then analyzed the qualitative data, including the diary content, to gain a deeper understanding of the quantitative findings. This approach enabled us to interpret the quantitative results in greater depth.²⁹

Research materials

This study used the diaries of an older person with dementia, which she kept on a continual basis while residing alone at home, as recommended by a care manager. The diaries were written in vertically ruled B5-size notebooks, each consisting of 56 to 68 pages. Prior to this study, the researchers had conducted and published a qualitative content analysis of 12 diaries kept between January 2010 and mid-August 2013 by the same diarist, who was diagnosed with Alzheimer's disease in 2005 at the age of 94.²⁷ After that study, her family informed the researchers of the existence of a 13th diary, written from mid-August to mid-December 2013, and offered it for research use. Accordingly, the present study included this additional, 13th diary to clarify the daily life experiences of an older person with dementia residing alone in greater detail. To that end, the mixed-methods design was adopted, which differs from the previous study's qualitative descriptive analysis design.

Study subject

The study subject was an older person with dementia, referred to here as Aki (a pseudonym), who kept diaries on a continual basis while residing alone at home. More information about Aki is provided in Supplemental Material 1 and Supplemental Tables 1 and 2.

Analysis methods

Analysis of the number of diary entries

Aki began each diary entry by recording the date, time, and day of the week. An Excel file was created with each day's diary entry entered into one cell; however, if there were multiple diary entries made throughout the day, the content of each entry was entered into its own cell. For some entries, the date of writing was unclear because it was not recorded, but these entries were still entered one per cell. The diaries included several entries written by Aki's home helpers, but only entries written by Aki herself were included in the analysis.

Using this method, the Excel data were reviewed to determine the total number of days with entries and the number of entries per year, per day, and with unknown date.

Quantitative text analysis using KH coder

Text mining uses natural language processing to reveal patterns and make predictions based on advanced language understanding.³⁰ Further, it is a valid and reliable method for objectively analyzing data³⁰ and is thus often used in public health and nursing research.^31–33 The present study performed text mining analysis of the diary contents using KH Coder (Ver3.Beta.01e). The analysis involved the following 4 steps:

Data entry: The diary contents were entered in an Excel file, as described above.

Data cleansing: Data cleansing was performed using the “word selection” function of KH Coder. Terms referring to days of the week and specific places and people (e.g., “Wednesday,” “adult day care,” “oldest son”) were standardized. Custom compound terms (e.g., “care manager”) were defined to prevent word splitting during text extraction (e.g., “care” and “manager”). Unknown words and interjections were excluded. Finally, common Japanese verbs such as “think,” “consider,” and “say,” which typically appear at the end of sentences and carry little semantic meaning, were treated as uninformative words and excluded.

Word frequency list: The cleansed data were imported into KH Coder to generate a word frequency list, which presents the words used in the diary text in the order of the number of occurrences.

Co-occurrence network: A co-occurrence network was created to understand the connections among frequently used words, and subgraphs were created to show groups of related words. A subgraph represents a cluster of words that frequently co-occur. Strongly linked words are color-coded for visualization.

To ensure reliability and validity, the original diary text and Excel contents were cross-checked multiple times.

Qualitative content analysis

The qualitative analysis was performed as follows. Cells containing words that appeared in the co-occurrence network were extracted from the Excel file containing all diary contents. The extracted cells were then categorized by subgraph. Subsequently, sentences were extracted from the cells and coded, with care taken not to alter the words or semantic content of the subgraphs. Semantically similar codes were grouped into subcategories and categories, which were further organized into higher-level core categories. Care was taken to ensure that the words from the co-occurrence network were included in the subcategories and categories. To ensure validity, the analysis was supervised by a researcher familiar with dementia nursing research.

Ethical consideration

This study was conducted with approval from the Ethics Review Committee of the Chiba University Graduate School of Nursing (Approval No: R2-58).

The diarist, along with her family, provided a total of 12 diaries to the lead author in 2015, with the hope that they would be used for education and research. In the previous study,²⁷ informed consent was obtained from the diarist herself and her second oldest son, following approval from the Chiba University Graduate School of Nursing Ethics Review Committee (Approval No. 28-69). At that time, the lead author privately asked the diarist whether there were any parts of the diaries she wished to keep confidential or exclude from analysis. She stated that there was nothing she wished to withhold. To ensure the integrity of the analysis and protect anonymity, the lead author proposed that the names of individuals and places not be disclosed in publications, and the diarist agreed.

By the time the present study was requested, which was intended to analyze all 13 diaries, the diarist had passed away. Verbal and written explanations were provided to her second oldest son (her legal representative), who provided written consent. As described in Supplemental Material 1, his reasons for granting consent were that the diarist had worked as a high school home economics teacher and had expressed to him that she wanted her diaries to be used for educational and research purposes. In addition, she enjoyed reading books by the renowned Japanese writer Fumiko Hayashi (1904–1951), who is known for her novels based on her own diary. The diarist was pleased when our previous paper was published in 2018. Given her close relationship with her second oldest son and the fact that she frequently shared her feelings with him, he judged that she would have willingly agreed to provide all 13 diaries as research material. He was informed of the voluntary nature of participation, his right to decline, how personal information and data would be handled, and the intent to publish results. As in the previous study, we obtained his consent to use pseudonyms for all names and locations to ensure anonymity. This study was performed in accordance with the Declaration of Helsinki.

Results

Number of diary entries

The status of Aki's diary keeping from 2010 to 2013 is shown in Table 1. The number of days with diary entries exceeded 200 each year, with the highest number recorded in 2012 (268 days). Entries with unknown dates were not included in the count. The total number of diary entries increased from 268 in 2010 to a peak of 507 in 2012 and then decreased to 457 in 2013. Across all years, most days with entries had only 1 entry. However, after 2010, the number of days with multiple entries increased. In 2011 and 2012, there were days with up to 7 entries, and in 2013, there were 4 days with 8 or more. On days with multiple entries, Aki recorded the time of each entry. In 2011, there were 5 diary entries with unknown dates; the number increased to 25 in 2013.

Table 1.

Number of diary entries.

Year		2010	2011	2012	2013
Total number of days with diary entries^a		214	201	268	203
Total number of diary entries^b		268	311	507	457
Number of diary entries per day^a	1 entry	169	128	135	96
	2 entries	36	51	72	57
	3 entries	9	16	44	19
	4 entries	0	4	9	16
	5 entries	0	0	6	6
	6 entries	0	1	1	3
	7 entries	0	1	1	2
	8 entries	0	0	0	1
	9 entries	0	0	0	2
	10 entries	0	0	0	0
	11 entries	0	0	0	0
	12 entries	0	0	0	0
	13 entries	0	0	0	1
Total number of entries with unknown date		0	5	19	25

Not including entries with unknown date.

Including entries with unknown date.

Frequent words appearing in the diaries

A total of 126,841 words were extracted, and the number of cells of text was 1260.

The 50 most frequently used words are listed in Table 2. The most frequently used word was “I (jibun).” The second and third most frequently used words were “now” and “today,” respectively, and another word related to time, “morning,” ranked eighth. The fourth most frequent word was “adult day care.” “Write,” “go,” and “can”—all action words—ranked fifth, sixth, and ninth, respectively. The seventh most frequent word, “second oldest son,” referred to one of the 3 sons who visited Aki. The word “miserable (aware),” which expressed Aki's feelings, was the 10th most frequently used word.

Table 2.

Word frequency list.

Rank	Word extracted [English translation]	Frequency
1	I	1145
2	Now	828
3	Today	758
4	Adult day care	646
5	Write	613
6	Go	559
7	Second oldest son	392
8	Morning	315
9	Can	314
10	Miserable	296
11	Come	295
12	Person	292
13	Phone	292
14	Human	259
15	Do (things) for me	229
16	Go home	212
17	Night	195
18	Breakfast	193
19	Notebook	181
20	Sunday	179
21	Fast	174
22	Forget	172
23	Do not understand	170
24	C [name of home helper]	167
25	Do	166
26	Third oldest son	162
27	Saturday	162
28	Be sure	161
29	Wednesday	144
30	Important	144
31	Friday	143
32	Tuesday	142
33	Thing(s)	137
34	Various	134
35	Thursday	133
36	Grateful	123
37	Money	121
38	Monday	121
39	Husband	118
40	House	113
41	Younger brother	113
42	Out	111
43	Before	111
44	Every day	110
45	Tomorrow	105
46	Nothing	102
47	Be careful	102
48	Home helper(s)	100
49	Older brother	97
50	A little	92

Although not in the top 10, all 7 days of the week were among the 20th to 38th most frequent words.

Aki's experiences of residing alone

The co-occurrence network consisted of 8 subgraphs (Figure 1). For each subgraph, the corresponding diary excerpts were extracted, and qualitative content analysis was performed based on similarities and differences in the semantic content. The subcategories, categories, and core categories created from the diary contents, as well as the number of times the corresponding text was found per year, are shown Table 3. Specific life experiences are described below for each subgraph using ‘ ’ for subcategories, [] for categories, and <> for core categories.

Experiences relating to “I,” “miserable,” “human,” “forget,” “person,” “notebook,” “write,” and “do not understand”.

Figure 1.

The co-occurrence network (in Japanese and English). The co-occurrence network was created to understand the connections among frequently used words in Aki's diaries written in Japanese, and subgraphs were created to show 8 groups of related words.

Table 3.

Aki's experiences of residing alone.

Subgraph	Core category	Category	Subcategory	Year Number of entries
Subgraph	Core category	Category	Subcategory	2010	2011	2012	2013
“I”	Sorrow and loneliness due to forgetfulness	I am a miserable human, and I feel pathetic that I don’t understand anymore.	I have become a silly person; I am sad about my foolishness and think I am a miserable person.	0	6	2	8
“Miserable”			I have become forgetful and absent-minded, and I don’t understand anymore; I feel pathetic as a miserable human.
“Human”			I have become senile and silly, which makes me feel miserable and undignified, and lonely.
“Forget”			I have become a worthless human; I feel miserable and undignified.
“Person”			I feel worthless not being able to do anything like everyone else, and I am miserable and pathetic—it's embarrassing.
“Notebook”		I don’t know who I am.	I don’t know who I am, and I feel miserable and undignified.	0	1	1	2
“Write”		I think I am miserable as I forget things, but it's inevitable at this age.	I think I am miserable as I forget things, but it's inevitable at this age.	0	2	2	0
“Do not understand”		I forget what I wrote, or that I have written something.	I forget what I wrote in my notebook, losing track.	0	3	4	4
			I don’t know what I wrote myself.
			Subtotal	0	12	9	14
	Writing in a notebook to maintain my proper character	I have become a miserable human, but I will protect myself without relying on people.	I forget and do not understand, and I feel pity for myself and am embarrassed, but I will protect myself.	0	3	5	6
			I have become a miserable human, but I will protect myself by getting a grip on myself.
			I feel that people look down on me, but if I don’t take care of myself first, people won’t respect me; so I will protect myself.
			I feel frustrated because of my lack of strength, but I will get my act together to improve myself and protect myself.
			I have become a foolish person, and I feel undignified and miserable; however, I will protect myself so I can be a responsible human.
			I go to the bathroom in the middle of the night, which makes me feel miserable and pitiable, but I will get my act together to be a non-miserable human.
			I am a miserable human; I would not rely on people to fix my foolishness, and I will create myself and take care of myself.
		I will make efforts and not be defeated by myself so I would not become a miserable human.	I tell myself to get a grip on myself and not to forget, so I would not become a miserable human.	1	1	5	3
			I find myself pitiable but I am trying to do my best not to be defeated by myself.
			I feel foolish and frustrated that I did not write my diary, so I try to make an effort to make sure I write, without being defeated by myself.
		I feel miserable, but I will live, thinking hard and gaining insight into my inner-self.	I have become forgetful and I don’t understand, which makes me feel miserable, but I will try to live by thinking hard.	1	1	0	2
			I have become a worthless human and feel miserable, but I try to live by thinking hard as much as I can.
			Because I feel miserable and foolish, I live by thinking hard and gaining insight into my inner-self.
		I will at least write in my notebook, for myself who has become forgetful and unable to understand.	I take a notebook to adult day care and write in it from time to time, as I immediately forget what I did in adult day care and can’t remember.	6	0	7	3
			I can’t remember if I don’t write on a moment-to-moment basis, because I’m foolish, so I take notes from time to time.
			I forget and can’t remember because I didn’t write; I feel sad and lonely.
		I improve myself by writing in my notebook.	I write what I’ve done before nighttime, because I won’t know anything and don’t remember, and improve myself.	0	0	3	3
			I write in my notebook things that will make myself better, and I write to improve myself; therefore, I think before writing.
			I read what I have written, check myself, and get a grip on myself.
		I will think and write in a notebook carefully.	I will think and write in a notebook neatly.	1	0	2	5
			The notes are poorly written and unpresentable, so I will write neatly and carefully.
			I will write in my notebook carefully because if I don’t write neatly, it can’t be understood.
			Subtotal	9	2	17	16
	Be conscious of the relationships with others I write about in my notebook	How miserable am I who has some stranger write in her notebook without permission.	I am a miserable human who has some stranger write in her notebook without permission.	0	0	1	2
		Someone I don’t know is writing in my notebook, but I think that this person might be someone familiar who thinks of me.	I am troubled by the fact that someone is writing in my notebook without my permission, but I think that this person might be someone close, and I feel grateful that he/she is thinking of me.	0	0	2	0
			Subtotal	0	0	3	2
			Total	9	14	29	22
“Be sure”	Doing things that make me better	There is nothing I can do, but I will try as much as possible while consoling myself.	I feel sorry that I can’t do anything due to my age.	4	4	2	0
“Do”			I admire myself in the past thinking; I cannot do anything now, while I also think it's inevitable.
“Can”			I am angry at myself who cannot do anything, but I think that it is because of my age and do things as much as I can, so that I can get better even a little.
“Nothing”			I try to do things properly, but there is not a thing I can do; I calm myself saying it is okay.
		Although I entrust myself to someone's care, I do things thinking how they may be able to help.	I can’t do anything for people, and rather, I only have people taking care of me, but I will do things thinking how they may be able to help.	0	0	1	0
		I cannot do anything as I wish, but I do it to make myself better.	I want to take life one day at a time, but I can’t do anything.	0	3	1	4
			Because I can’t do anything as I want, I will make sure to do it.
			I just think and fail to do it, but I will do it to make myself better.
			Subtotal	4	7	4	4
	I will follow my routine without fail	Be sure to place offerings on the Buddhist altar and clean up.	I will always have Buddha's rice offering before noon.	0	1	2	0
			Be sure to clean up the Buddhist altar.	0	1	2	0
		Make sure to keep journals on a daily basis.	I am not properly keeping a daily journal; make sure to do it.	0	0	2	0
			I am not writing in my notebook every day; do what I can do.	0	0	2	0
			Subtotal	0	1	4	0
			Total	4	8	8	4
“Now”	The day begins after I finish breakfast	Think what kind of day it's going to be after breakfast.	I finish my breakfast at 7:00 in the morning and wonder what kind of day it's going to be.	4	11	16	15
“Morning”			I finish my breakfast at 8:00 in the morning and wonder what kind of day it's going to be.
“Night”			After breakfast, I write a diary and watch time go by wondering what kind of day it's going to be.
“Today”		I have breakfast at 7 a.m. on the day I go to adult day care.	On the day I go to adult day care, I have breakfast at 7 a.m.	0	0	2	1
“Breakfast”		Think about what to do today after breakfast.	After breakfast, I think about what kind of day it's going to be, and what I will do today because I do nothing every day.	1	1	4	4
			I don’t know what to do today after breakfast, but I think about what to do.	1	1	4	4
		After breakfast, I think that I should spend a day cherishing each moment.	The day begins after I finish breakfast, and I try to spend my day cautiously cherishing each moment.	0	2	4	2
			After I finish breakfast, I try to live today being grounded.
			I finish breakfast and think it's a waste not to think about what kind of day it's going to be.
		I look forward to the evening to look back on the day since breakfast.	After breakfast, I think of what kind of day it's going to be as look forward to the evening to reflect on the day.	0	0	2	0
			Subtotal	5	14	28	22
	Recording the current time	Write the current time in the diary after performing daily living activities	I finish cleaning up after dinner and then write a diary, noting that it is now nighttime and record the time.	3	1	1	1
			I write a diary in the morning and note that it is now morning, recording the time.
			I write a daily journal when I go to the bathroom in the morning and record the current time.
		Write a daily journal when I wake up in the middle of the night	I went to bed, but now I am awake, writing a diary at night.	0	0	2	0
			It's midnight now, but I decide that I have to get up and write a diary from now on.	0	0	2	0
			Subtotal	3	1	3	1
			Total	8	15	31	23
“Younger brother”	Gratitude for and memory of the deceased family members	I feel sorry that I can’t do anything, while being grateful to the deceased family members.	Feeling sorry that I can’t do anything, while being grateful to my deceased older brother and sister with a sense of respect.	1	1	4	0
“Older sister”			I am grateful to my parents, my siblings, and my husband.	1	1	4	0
“Older brother”		Wallowing in nostalgia, feeling lonely after the loss of a family member	I am sad and feel pity for myself because my family has passed away and I am alone.	2	7	10	3
“Husband”			My parents, my older brother, my sisters, and my husband passed away, and I feel lonely.
			My parents, my older brother, older and younger sisters, and my husband all died, and I feel lonely being just two of us, me and my little brother; I remember and yearn after my old days.
			My little brother, the only remaining family, also died, and I’m all alone; I feel sad, lonely, miserable, and pitiable.
			Subtotal	3	8	14	3
	I will live positively even though my siblings passed away, leaving me all alone	Conscious of living positively, although my siblings passed away	I am all alone as my siblings passed away, but I am conscious that my married children are still there.	0	0	3	0
			I feel lonely being alone after all my siblings died, but I am determined to stay positive and live strong.
			I’m sad that my siblings have passed away, but I think it can’t be helped because of age.
			Subtotal	0	0	3	0
			Total	3	8	17	3
“Home helper(s)”	Appreciation for the fact that the home helper C comes to visit	Feeling grateful that C comes to visit	I am grateful that C comes to visit and I get to teach her, and she teaches me.	11	3	5	0
“C”			C comes to take care of me and clean the house, and then goes home.
“Come”			I feel sorry that C comes to visit me.
“Go home”		Having C to come over to do things together	The thing I thought I hanged outside to dry is missing, and I check with C.	6	1	3	0
“Various”			C comes to visit and tries to find what I’m looking for with me.
“Do (things) for me”			I ask C to come and request shopping and accompanying services, and to ask about things that are bothering me.
			C comes by for me, but I will try to act on my own initiative.
		Wishing only C could be requested as a home helper	I didn’t ask for a home helper, but they came, and it bothers me.	1	1	5	0
			I think that the financial burden will be greater if I have multiple home helpers coming, so I want to make it just C.
			I don’t know who the person was that came to visit me, so I want only C to be my home helper.
			Subtotal	18	5	13	0
	Uncertainty of support by the home helper C	Forgetting and not knowing that C had come to visit, what she did for me, and making a request	C comes, but I don’t know what she did for me.	4	2	1	0
			I don’t know whether C came or not.
			It's the day C is supposed to come, but I forgot to ask and I don’t know.
			Subtotal	4	2	1	0
	Bitterness toward home helpers other than C	I feel vulnerable with the home helpers.	Because I cannot do anything, I feel vulnerable with the home helpers who make a visit for me, even though they are younger than me.	1	0	1	0
			Subtotal	1	0	1	0
	Relying on home helpers to do the housework	I depend on the home helpers who come to do the housework.	Because I can’t do the housework adequately for myself, I depend on the home helpers who come to clean the house and enjoy talking with them.	8	4	4	2
			Having a good feeling toward the fact that the home helpers come visit.
			I check the day when my home helpers come, and make a request to have the housework done.
			Home helpers come and do my errands, and then go home.
			Subtotal	8	4	4	2
			Total	31	11	19	2
“Second oldest son”	Asking for help and thanking my sons in times of trouble	I call my second and third oldest sons on the phone to tell them about things I don’t understand and to thank them.	I called my second and third oldest sons on the phone because there were things I didn’t understand.	5	1	4	3
“Third oldest son”			I called my second and third oldest sons on the phone to thank them for coming to visit me.
“Money”			My second oldest son came to visit and took care of me in various ways, and I called him on the phone to thank him, feeling sorry for causing so much trouble.
“Phone”		I call my second oldest son on the phone when there are things I don’t understand about money.	I called my second oldest son on the phone because there are things I don’t understand about money.	3	3	3	4
			I owe money to my oldest son's wife, and ask my second oldest son about it.	3	3	3	4
			I called my second oldest son to confirm about money, being conscious of my death.
		I called my second oldest son to discuss the future.	I called my second oldest son to ask him to handle matters in the future.	0	0	1	1
			I thought about calling my second oldest son to discuss the future, but I suddenly don’t know what I wanted to discuss.	0	0	1	1
		Feeling lonely alone after my second and third oldest sons had gone home, I asked for help.	After my second and third oldest sons had gone home, I was all by myself and felt indescribable feelings and loneliness, so I sought help.	0	1	2	0
			I called my second oldest son, but he was not home, and I got lonely all by myself.	0	1	2	0
		Not remembering the substance of a phone call or that I called my second oldest son	I called my second oldest son, but I forgot the substance of the phone call.	0	1	3	4
			I am unsure if I called my second oldest son or not.	0	1	3	4
		To save money, I called my second oldest son to ask for cooperation.	I told my second oldest son that I’d pay the money related to adult day care myself.	2	2	6	0
			Thinking it is a waste that home helpers cost money, I called my second oldest son in an attempt to reduce the frequency.
			Feeling sorry that my second oldest son is always being so good to me, I asked him not to call me on the phone because it costs money.
			Subtotal	10	8	19	12
	I can’t do anything, even though I am grateful to my sons for coming.	I can’t do anything, even though I am grateful to my second and third oldest sons for coming.	I am grateful to my second and third sons for coming and being nice to me.	6	6	2	2
			My second and third oldest sons came to visit me, but I felt sorry for not being able to do anything.	6	6	2	2
			Subtotal	6	6	2	2
			Total	16	14	21	14
“Adult day care”	Feeling disoriented due to the use of adult day care	Checking the day of the week to go to adult day care	The days of the week to go to adult day care are Wednesday and Friday.	5	2	8	3
“Go”			Tuesday and Thursday, and tomorrow is the day to go to adult day care.
“Wednesday”			Because it's Saturday, today is not the day to go to adult day care.
“Friday”		No longer knowing the day of the week to go to adult day care, I waited to be picked up.	I don’t know what day I’m supposed to go to adult day care, and the days I can’t go I forget and wait for them to come pick me up.	0	1	0	4
		Not knowing what I did at the adult day care center or why I did not go	I went to adult day care but don’t remember what I did, and I don’t know.	7	8	9	10
			I went to adult day care, but I forgot what I did and can’t write about it.
			I must have gone to adult day care, but I forgot because I didn’t write it right away, and I don’t know.
			I went to adult day care, but at night I forgot and do not know.
			I skipped adult day care, but I don’t know why I skipped.
			I don’t know if I went or skipped adult day care.
			I don’t remember anything, why didn’t I go to adult day care.
			Subtotal	12	11	17	17
	Quit adult day care to respect myself	Not feeling like going to adult day care, and making a phone call to tell them I’m not coming	I took a break from adult day care due to my poor health.	8	2	1	0
			It's the day to go to adult day care, but I call them to let them know I’m not coming.
			I felt lonely and sad being all by myself and skipped adult day care because I didn’t feel like going.
		Spending time differently from adult day care to take care of myself	When I get tired, I quit going to adult day care; I will work hard to be grateful just for being alive.	4	5	3	1
			Because I forgot what I did at the adult day care, I will think when I go and treasure the day.
			Because I forgot what I did at the adult day care, I decide to quit adult day care and look after myself quietly at home.
		I want to quit going to adult day care.	I consider reducing [the frequency] to only Wednesdays or quitting, because going to adult day care costs money.	0	0	4	4
			Thinking I must be able to take care of myself, I consider not going to adult day care any more.	0	0	4	4
			Subtotal	12	7	8	5
	Learning from others in adult day care	Going to adult day care is fun, but it's more than I deserve.	Going to adult day care is fun and I appreciate it, but it's more than I deserve because I can’t do anything.	1	1	3	0
		Going to adult day care to improve myself by following others	I think I can learn by going to adult day care, and that it is a place where I interact with people who can help me develop.	7	0	8	5
			When I go to adult day care, to emulate good practices, I ask and remember the names of my friends and other people.
			will go to adult day care and learn from my dependable friend, trying to improve myself and not to be obtrusive.
			Subtotal	8	1	11	5
			Total	32	19	36	27
“Letters”	Realized the difficulty in reading letters	It's inevitable that I cannot read letters at this age.	I think it's inevitable at this age that I cannot read a book because of small print.	0	2	2	0
“Read”			I think it's inevitable that I cannot read letters in a book, so I try new things and just do a good job in doing the things I can do.	0	2	2	0
			Subtotal	0	2	2	0
		Feeling frustrated by how difficult it is to read small print	Feeling the difficultly in reading because of small print	0	5	5	1
			Feeling frustrated by not being able to read the book because of small print
			The letters in the book are small, and I feel tired exerting myself to read.
			Subtotal	0	5	5	1
			Total	0	7	7	1

As Aki's memory deteriorated, she felt <sorrow and loneliness due to forgetfulness>. She was aware that she was becoming senile (‘I have become forgetful and absent-minded, and I don’t understand anymore; I feel undignified as a miserable human,’ ‘I have become senile and silly, which makes me feel miserable and undignified, and lonely’) and expressed her feelings as [I am a miserable human, and I feel pathetic that I don’t understand anymore]. These records appeared 0 times in 2010, but increased to 14 times in 2013.

Because of these feelings, Aki tried <writing in a notebook to maintain my proper character> so that she would not forget what she needed to do or had done. Aki stated [I will think and write in a notebook carefully], being conscious that [I have become a miserable human, but I will protect myself without relying on people] (‘I have become a miserable human, but I will protect myself by getting a grip on myself,’ ‘I am a miserable human; I would not rely on people to fix my foolishness, and I will create myself and take care of myself’). In this way, while Aki was aware of her declining memory, she protected herself with her own coping methods, even though she felt sorry for herself. These descriptions appeared 17 times in 2012 and 16 times in 2013.

Aki also revealed through her diaries that she had become <conscious of the relationships with others I write about in my notebook>. When she found an entry in her notebook that she did not write, she expressed, [how miserable am I who has some stranger write in her notebook without permission]. On the other hand, there were times when she felt, [someone I don’t know is writing in my notebook, but I think that this person might be someone familiar who thinks of me].

Examples: Today was not the day to go to adult day care, but I forgot and was waiting for them to come pick me up… (omitted) I felt pity for myself. Pitiable. Pitiable. Pitiable. I feel lonely. I feel lonely. Miserable. Miserable. I hope someone comes to visit (2011).

I have already forgotten what I did today… (omitted) I will protect myself to the extent I can. From now on, I should write down right away. Before I forget; I feel pity for myself for being this way. So, all the more, I should protect myself and be careful (2013).

Experiences relating to “be sure,” “do,” “can,” and “nothing”

Aki was aware that she was increasingly unable to do things on her own and had written about her desire to <do things that make me better>. She described her wills and efforts, such as, [there is nothing I can do, but I will try as much as possible while consoling myself] and [I cannot do anything as I wish, but I do it to make myself better]. Aki also stated . She mentioned specific routines, including [be sure to place offerings on the Buddhist altar and clean up], and [make sure to keep journals on a daily basis]. These types of entries were found 8 times each in 2011 and 2012.

Examples: Starting tomorrow, I will always have Buddha's rice offering before noon. Be sure. Be sure. Be sure. I must make it a rule to keep my word. Do. Do. Do (2011).

I am not properly keeping a daily journal. Be sure to do it. Think well and do what you can do. Think carefully about what to do. Think well and do what you can do tomorrow (2012).

Experiences relating to “now,” “morning,” “night,” “today,” and “breakfast”

Aki stated that <the day begins after I finish breakfast>. Specifically, first, she would [think what kind of day it's going to be after breakfast]. This description appeared 4 times in 2010, increasing to 16 times in 2012 and 15 times in 2013. In addition, she started to [think about what to do today after breakfast]. In other words, Aki began to think specifically about how she would spend her day by first thinking about what kind of day she would have.

Aki also described <recording the current time>. Although the frequency of time recordings did not vary significantly by year, she would [write the current time in the diary after performing daily living activities] (‘I write a daily journal when I go to the bathroom in the morning and record the current time’) and [write a daily journal when I wake up in the middle of the night], suggesting that she was making efforts to track the time throughout the day.

Examples: I finished my breakfast at 8:34 in the morning; I wonder what kind of day it's going to be (2010).

I started at 6:01. Breakfast is finally finished. It's 7:54. What kind of day is it going to be today? Think it over carefully about what to do (2013).

Experiences relating to “younger brother,” “older sister,” “older brother,” and “husband”

Each year, Aki wrote something relating to <gratitude for and memory of the deceased family members>, but in 2012, when Aki's younger brother passed away, these descriptions appeared 14 times, a significant increase compared with other years. In particular, in 2012, she described 10 times her feeling of [wallowing in nostalgia, feeling lonely after the loss of a family member].

On the other hand, Aki stated, , and there were 3 entries in 2012 reflecting this. She became [conscious of living positively, although my siblings passed away] by cherishing her family, including her children who were still alive (‘I am all alone as my siblings passed away, but I am conscious that my married children are still there,’ ‘I feel lonely being alone after all my siblings died, but I am determined to stay positive and live strong’).

Examples: My siblings, brothers and sisters, there were 8 of us, but now it's just two – me and my younger brother. I miss the old days. Remembering my older sister and my older brother, I feel lonely (2010).

My father, my mother, and my older brother and sister all died. My little brother also passed away, and I am all by myself. What a lonely thing. My husband also died. How miserable. My children are kind to me. Thank you (omitted) (2012).

Experiences relating to “home helper(s),” “C,” “come,” “go home,” “various,” and “do (things) for me”

Aki trusted C, a home helper, and had a feeling of <appreciation for the fact that the home helper C comes to visit>. This encompassed the experiences of [feeling grateful that C comes to visit], [having C to come over to do things together], and [wishing only C could be requested as a home helper]. There were 18 entries like these in 2010, 13 in 2012, and 0 in 2013. In addition, due to Aki's declining memory, she felt <uncertainty of support by the home helper C>. Specifically, she experienced [forgetting and not knowing that C had come to visit, what she did for me, and making a request] (‘C comes, but I don’t know what she did for me,’ ‘I don’t know whether C came or not,’ ‘It's the day C is supposed to come, but I forgot to ask and I don’t know’).

While feeling an appreciation for the home helper C, Aki also felt <bitterness toward home helpers other than C>, describing that [I feel vulnerable with the home helpers], regarding other home helpers.

She also mentioned <relying on home helpers to do the housework>. Not limited to C, Aki wrote about her home helpers as follows: [I depend on the home helpers who come to do the housework] (‘Because I can’t do the housework adequately for myself, I depend on the home helpers who come to clean the house and enjoy talking with them,’ ‘I check the day when my home helpers come, and make a request to have the housework done’).

The mention of her home helper(s) appeared 31 times in 2010 and 19 times in 2012. However, in 2013, there were only 2 entries about home helpers, which read [I depend on my home helpers to do the housework].

Examples: C came and cleaned the room for me. Thanks to you, I have been able to live in such a nice room (2010).

(omitted) Now I don’t even remember what kind of person XX was. I don’t know what a home helper is. Ask the home helper C. More than that, for the house, decline having many home helpers. It's good if only C can come (2012).

Experiences relating to “second oldest son, “third oldest son,” “money,” and “phone”

Aki wrote about <asking for help and thanking my sons in times of trouble> concerning the management of her money and future affairs. These descriptions appeared 10 times in 2010, 19 times in 2012, and 12 times in 2013. In particular, she described the experience of [I call my second oldest son on the phone when there are things I don’t understand about money] (‘I called my second oldest son on the phone because there are things I don’t understand about money,’ ‘I called my second oldest son to confirm about money, being conscious of my death’) 3 to 4 times every year. The number of entries related to [not remembering the substance of a phone call or that I called my second oldest son] increased from 2011 to 2013. She also expressed her feelings about the fact that her second and third oldest sons, who lived far away, came to visit her, stating . These descriptions appeared 6 times each in 2010 and 2011, and 2 times each in 2012 and 2013.

Examples: Call my second oldest son. Regarding the bank books, which one did he take home? I just called my second oldest son. He says he only took the bank book, not money (2010).

I asked my second oldest son where he put the money (2013).

Experiences relating to “adult day care,” “go,” “Wednesday,” and “Friday”

Aki experienced <feeling disoriented due to the use of adult day care>. Among such experiences were [checking the day of the week to go to adult day care] and [no longer knowing the day of the week to go to adult day care, I waited to be picked up]. In addition, all years had entries in which Aki experienced [not knowing what I did at the adult day care center or why I did not go] because she was not able to write in her dairy when she was at the adult day care center. These descriptions appeared more than 10 times per year, with 17 entries each in 2012 and 2013.

In addition, Aki stated that she wanted to <quit adult day care to respect myself>. This included [not feeling like going to adult day care, and making a phone call to tell them I’m not coming], and [spending time differently from adult day care to take care of myself]. These descriptions were found most frequently in 2010 (12 times).

On the other hand, she found meaning in going to adult day care as <learning from others in adult day care>. These diary entries, which were found since 2010, included [going to adult day care is fun, but it's more than I deserve] and [going to adult day care to improve myself by following others] and were most frequently recorded in 2012 (11 times).

Examples: Friday. Go to adult day care. I did various things, but my head is fuzzy and cannot write anything because I forget (2010).

(omitted) Today also, people who are going to adult day care to learn are gradually increasing in number, one by one. This place is something to be grateful for. I will get my act together and do my best. I will “improve” myself (2013).

Experiences relating to “letters” and “read”

Aki loved reading and maintained this hobby even past the age of 100. However, she <realized the difficulty in reading letters>. She accepted this, writing [it's inevitable that I cannot read letters at this age], but also expressed [feeling frustrated by how difficult it is to read small print]. Comments related to these experiences appeared 7 times in 2011 and 2012, and once in 2013.

Examples: I brought out a book thinking I wanted to read it, but couldn’t read the letters (small) in the book. How miserable (omitted) … I think it cannot be helped, given the old age and decline in my physical strength (2011).

I bring out a book to read, but the “letters” are too small to read. I can’t do anything as I wish anymore (2012).

Discussion

Characteristics of the words used in the diaries

The diaries analyzed in this study were written freely by Aki with the encouragement of her care manager. She used the diaries to record real-time events and thoughts in an effort to slow memory loss.

For this reason, the most frequently used word (Table 2) was “I (jibun),” and words related to time such as “now,” “today,” and “morning” were also very frequent. In the context of Japanese long-term care insurance services, the term “adult day care” is also closely related to specific days and times.³⁴ Aki's sense of the present was affected by memory loss and temporal disorientation.²⁷ One of the ways people with dementia cope with memory loss is notetaking or journaling, sometimes carrying notes with them.³⁵ Aki may have also relied on the act of writing in her diary to compensate for cognitive impairment and used the word “write” frequently in her entries to confirm her success at that.

Place- and person-related terms also appeared frequently. “Adult day care” and “go” (to the adult day care center) ranked fourth and sixth, respectively, while “second oldest son” ranked seventh. The use of adult day care made Aki aware of her memory problems, and she sometimes had a strong desire to quit, but it was also a place where she enjoyed interacting with others and improving herself. Her second oldest son was a key person, whom she frequently relied on. Together, these patterns suggest that her diary entries reflected the importance of meaningful places and people, which appear to have helped her maintain a positive outlook.

The words “can” and “miserable” ranked ninth and tenth, respectively. Cognitive impairment reduces the number of things that one “can” do in everyday life, leading to frustration and reduced self-esteem.^36–38 Aki frequently used the word “miserable,” which appears to indicate her diminished self-esteem.

The meaning of experiences described by Aki in her diaries

In this study, Aki's diaries were subjected to qualitative content analysis based on text mining techniques to reveal what Aki experienced in daily life.

The meaning of experiences relating to writing and reading

Aki's cognitive impairment caused sorrow not only for not remembering what she had written, but also from a sense of losing her identity. People with dementia are sometimes thought to lack awareness of their condition.³⁵ However, Aki was clearly aware of the effects of dementia, and while she was deeply saddened, she made efforts to protect and improve herself by writing. This is reminiscent of Auguste D., the first recorded Alzheimer's patient, who repeatedly expressed “I have lost myself” when she could no longer write.³⁹ For Aki, the act of writing appears to have been important for maintaining a sense of self.

Reading, on the other hand, became more difficult for Aki, despite it being a hobby she enjoyed. Loss of visual acuity,⁴⁰ impaired comprehension,⁴¹ and impaired decision-making⁴¹ are common in dementia and can be misinterpreted by family members or caregivers as illiteracy. However, in Japan, some older patients with dementia can still read and understand short sentences containing kanji (Chinese characters).⁴² Therefore, reading support for these patients can be enhanced by considering how visual information is processed in dementia.⁴³

Meaning of experiences relating to routines

Temporal disorientation is common in dementia, making it important to preserve a structured daily routine.⁴⁴ Aki's references to daily routines included <the day begins after I finish breakfast>and <recording the current time>. Although the number of records regarding <recording the current time> did not change significantly over the years, she increasingly began making multiple diary entries per day, each with the time recorded. This suggests that Aki was trying to overcome her temporal disorientation by recording the time.

The study also revealed that Aki's starting point for each day was finishing breakfast. Presumably, having breakfast at 7 or 8 a.m. every morning was a long-standing habit for Aki. Such routines and time-recording behaviors may help reduce temporal disorientation for older persons with dementia residing alone, allowing them to preserve daily structure and maintain confidence in their abilities. However, from 2011 to 2013, Aki increasingly wrote undated entries, suggesting that these efforts became insufficient as her cognitive impairment progressed.

All 7 days of the week appeared among her most frequently used words. “Sunday” ranked highest (20th), followed by “Wednesday” (the day of the week Aki used adult day care, 29th) and “Friday” (31st). Although “Sunday” was not extracted as a subgraph term because it was recorded as the day of the week at the beginning of the entries, analysis revealed that it was often associated with visits from her sons. This association may explain its frequent appearance, as it represented a day of rest and family interaction. In addition, analysis of the subgraph “adult day care” revealed the experiences of [checking the day of the week to go to adult day care] and [no longer knowing the day of the week to go to adult day care, I waited to be picked up], which suggest that Aki may have been making inferences based on the day of the week.

Although home helper visits are also typically scheduled, Aki rarely mentioned the specific day of the week in those entries. Instead, she referred more vaguely to the “day” of their visits (e.g., ‘It's the day C is supposed to come, but I forgot to ask and I don’t know’). This suggests that leaving home to go to adult day care, which may have required preparation such as getting dressed, was more closely tied to a designated day of the week. Taken together, Aki appears to have used knowledge of the day of the week to maintain routines with her family and community.

The meaning of experiences with the family

Although Aki acknowledged that she was losing control, she consoled herself and maintained motivation to improve herself. Daily habits that were important to her included placing offerings on the Buddhist altar and writing in her diary. In particular, the cultural and religious act of placing offerings on the Buddhist altar was a habit for Aki even before she developed dementia, which allowed her to thank and feel connected to deceased family members.⁴⁵ Watanabe et al.⁴⁶ reported that older people with dementia who have lost their spouses often mourn by making offerings to Buddha and visiting their spouse's grave rather than avoiding the reality of the death. In Aki's case, mentions of [wallowing in nostalgia, feeling lonely after the loss of a family member] in <gratitude for and memory of the deceased family members> increased to 10 times in 2012, the year her younger brother passed away. This experience may have caused her to intensify her routine behaviors, as in , which may have been a way of convincing herself that she had successfully shared her life with her family, even with a memory disorder. In that same year, she recorded the highest number of diary entries (507). She also increasingly mentioned <writing in a notebook to maintain my proper character>, <the day begins after I finish breakfast>, and <asking for help and thanking my sons in times of troubles >. These descriptions may be specific methods Aki used to inspire herself to live positively and resiliently, despite grieving her younger brother.⁴⁷ The following year (2013), the number of times she mentioned [wallowing in nostalgia, feeling lonely after the loss of a family member] decreased to 3 times.

Her experiences related to future plans and money included depending on her living sons, especially her second oldest son, and communicating by phone. However, she also contended with forgetting that she had called her second oldest son, not remembering what she wanted to tell him, and feeling that she was helpless, despite being grateful to her sons. This suggests that Aki valued her relationships with both her deceased and living family members. Given Japan's declining birth rate,⁴⁸ it may be difficult for older people with dementia who live alone to depend on their family members. Communities based on the long-term care insurance system⁴⁹ and community-based integrated care system^49,50 recognize the importance of providing individual support for such patients. Japan has developed training programs for dementia supporters to help local patients and their families,⁵¹ and as of March 2025, there were approximately 16 million dementia supporters in Japan.⁵² Their role will likely become increasingly important as the number of older persons with dementia residing alone increases.

The meaning of experiences relating to the use of long-term care insurance services

Under Japan's long-term care insurance system, older persons with dementia commonly receive home visits and attend adult day care several times per week.⁵⁰ Aki's long-time home helper was C, whom she trusted, as evidenced by expressions of <appreciation for the fact that the home helper C comes to visit>. However, as Aki's dementia progressed and new helpers were introduced, she began to feel <bitterness toward home helpers other than C>, and felt that she was vulnerable with them, or that they visited without her permission. These findings suggest that older persons with dementia may judge whether individual home helpers are trustworthy or not based on their words and actions, and that the patients may have questions about their care. Because care for such patients is typically provided by a team,⁵³ it is important for the team to continuously evaluate whether they are effectively supporting trust and communication with the patient.

With regard to adult day care, Aki did not mention whether she trusted the staff members. Rather, she described many instances in which she forgot which day of the week to go to adult day care or what she had done there, indicating that she was confused about the use of adult day care. Adult day care serves both users and their home caregivers^50,54 and provides various activities for older persons with dementia.⁵⁵ Although Aki experienced <learning from others in adult day care>, her negative experiences relating to adult day care suggest that the support provided may not have adequately addressed her needs. Future support efforts should aim to not only complement memory and orientation functions, but to raise self-esteem, which may enrich the experience.

Informed consent in studies using diaries as research material

Diaries often contain deeply personal information, including feelings of pain and grief. Therefore, in studies such as the present one that analyze diaries written by persons with dementia, obtaining informed consent is particularly important. Consent should be sought directly from the person with dementia whenever possible, with the explanations and language adapted to their decision-making capacity.^56,57 In this study, however, the diarist had already passed away at the time of analysis. In such cases, it is important to obtain informed consent from a legal representative who fully understands the person's values, lifestyle, and preferences and can make decisions consistent with the person's likely intentions and living will.⁵⁸ In the present study, the diarist's legal representative was her second oldest son, who had maintained a close and supportive relationship with her and was therefore well positioned to make an informed judgment on her behalf. Researchers must take sufficient ethical precautions to protect privacy and minimize psychological burden, thereby enabling the legal representative to make appropriate decisions.

Study limitations and future challenges

This study's analysis of 13 diaries written by a person with Alzheimer's disease revealed valuable insights into the daily experiences of an older person with dementia. In particular, the study identified themes related to writing and reading, bereavement, and the use of adult day care, which were not fully explored in a previous study analyzing 12 of the diaries. Aki's experiences related to these themes may offer important considerations for dementia care. However, because this study involved only a single participant and the diarist had cognitive impairment, her diaries, as retrospective records, may not provide fully reliable information and could have introduced bias. Moreover, the content and writing style of a diary vary by individual, so the findings cannot be generalized. Additionally, because we wanted to preserve the text as originally written, typographical errors in the text were not corrected, and word unification was minimal. Therefore, a different preprocessing approach may yield different results. Because the original diaries were written in Japanese, limitations related to translation may also be present. In the future, if diaries written by multiple older persons with dementia become available as research materials, we hope to clarify their experiences using the same mixed-methods design applied in the present study, which would further deepen our understanding of older persons with dementia and inform the development of care strategies.

Conclusions

Through analysis of diaries freely written by Aki, a woman with Alzheimer's disease residing alone, this study revealed that she experienced <sorrow and loneliness due to forgetfulness> and <feeling disoriented due to the use of adult day care>, indicating that she was in a state of bewilderment and felt lonely and sad, especially after her younger brother passed away. However, Aki made efforts such as <recording the current time>, <writing in a notebook to maintain my proper character> so that she would not forget what happened, and <learning from others in adult day care> so that she would not become a pitiable person. The analyses also revealed her experience of trying to live positively, with gratitude for her family and home helpers, as indicated by statements such as <doing things that make me better>, , and . These results suggest that keeping a diary may have been an important means for Aki to complement her memory and temporal orientation, and to motivate herself to live positively despite the deaths of her family members. The findings also indicate that future care for older people with dementia residing alone might be aimed at complementing their memory and temporal orientation both at home and in adult day care, helping them maintain routines even after bereavement, and promoting their self-esteem.

Supplemental Material

sj-docx-1-alr-10.1177_25424823251396055 - Supplemental material for Daily life experiences of an older woman with Alzheimer's disease residing alone as recorded in her diaries

Supplemental material, sj-docx-1-alr-10.1177_25424823251396055 for Daily life experiences of an older woman with Alzheimer's disease residing alone as recorded in her diaries by Saori Hirano, Lu Zhou, Motoshi Ouchi and Sayuri Suwa in Journal of Alzheimer's Disease Reports

Footnotes

Acknowledgements

We sincerely thank the diarist and her family for providing the valuable diaries for this study. In addition, we would like to thank Ms Akiko Fujiwara, and Ms Miwa Mori (Chiba University) for their technical assistance.

ORCID iDs

Saori Hirano

Lu Zhou

Sayuri Suwa

Ethical considerations

This study was conducted with approval from the Ethics Review Committee of the Chiba University Graduate School of Nursing (Approval No: R2-58).

By the time the present study was requested, which was intended to analyze all 13 diaries, the diarist had passed away. Verbal and written explanations were provided to her second oldest son (her legal representative), who provided written consent. As described in , his reasons for granting consent were that the diarist had worked as a high school home economics teacher and had expressed to him that she wanted her diaries to be used for educational and research purposes. In addition, she enjoyed reading books by the renowned Japanese writer Fumiko Hayashi (1904–1951), who is known for her novels based on her own diary. The diarist was pleased when our previous paper was published in 2018. Given her close relationship with her second oldest son and the fact that she frequently shared her feelings with him, he judged that she would have willingly agreed to provide all 13 diaries as research material. He was informed of the voluntary nature of participation, his right to decline, how personal information and data would be handled, and the intent to publish results. As in the previous study, we obtained his consent to use pseudonyms for all names and locations to ensure anonymity. This study was performed in accordance with the Declaration of Helsinki.

Consent to participate

Written informed consents were obtained from a participant and a proxy (a close family member). This study was performed in accordance with the Declaration of Helsinki.

Consent for publication

Written consents for publication were obtained from a participant and a proxy (a close family member).

Author contribution(s)

Saori Hirano: Data curation; Formal analysis; Methodology; Visualization; Writing – original draft.

Lu Zhou: Formal analysis; Validation; Writing – original draft.

Motoshi Ouchi: Methodology; Supervision; Visualization; Writing – review & editing.

Sayuri Suwa: Conceptualization; Formal analysis; Methodology; Supervision; Visualization; Writing – review & editing.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by IAAR Next-generation Research of Social Value Creation Research Support Program, Chiba University, Japan. The funding sources had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript, or in the decision to publish the results.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

These data are not publicly accessible due to privacy and restrictions.

Supplemental material

Supplemental material for this article is available online.

References

Cabinet Office. 2024 White Paper on Aging Society (Full Edition): Current status and future outlook of aging, https://www8.cao.go.jp/kourei/whitepaper/w-2024/zenbun/pdf/1s1s_01.pdf (2024, accessed 23 October 2024).

Cabinet Office. 2024 White Paper on the Aging Society (Full Edition): Families and households, https://www8.cao.go.jp/kourei/whitepaper/w-2024/zenbun/pdf/1s1s_03.pdf (2024, accessed 23 October 2024).

Cabinet Office. 2024 White Paper on Aging Society (Full Edition): Health and Welfare, https://www8.cao.go.jp/kourei/whitepaper/w-2024/zenbun/pdf/1s2s_02.pdf (2024, accessed 23 October 2024).

Song

Tang

. The community-based integrated care system in Japan: health care and nursing care challenges posed by super-aged society. Biosci Trends 2019; 13: 279–281.

Ministry of Health, Labour and Welfare. Guidelines for decision-makeing support for people with Dementia in daily life and social life, https://www.mhlw.go.jp/file/06-Seisakujouhou-12300000-Roukenkyoku/0000212396.pdf (2018, accessed 6 February 2025).

Japan Dementia Working Group. Declaration of hope for living with Dementia, https://www.mhlw.go.jp/content/000569489.pdf (2018, accessed 25 October 2024).

Ministry of Health, Labour and Welfare. The Basic Act on Dementia to Promote an Inclusive Society, https://laws.e-gov.go.jp/law/505AC1000000065 (2024, accessed 1 October 2024).

Reagan

. Reagan's Letter Announcing his Alzheimer's Diagnosis, https://www.reaganlibrary.gov/reagans/ronald-reagan/reagans-letter-announcing-his-alzheimers-diagnosis (1994, accessed 5 December 2024).

Reagan

. The Reagan diaries. New York: Harper-Collins Publishers, 2007.

10.

Wang

Luo

Peddagangireddy

, et al. Personalized early stage Alzheimer's disease detection: a case study of President Reagan's speeches. arXiv 2020. DOI: 10.48550/arXiv.2005.12385 [Preprint]. Posted May 8, 2020.

11.

Berisha

Wang

LaCross

, et al. Tracking discourse complexity preceding Alzheimer's disease diagnosis: a case study comparing the press conferences of Presidents Ronald Reagan and George Herbert Walker Bush. J Alzheimers Dis 2015; 45: 959–963.

12.

Fins

. The Reagan diaries reconsidered. J Alzheimers Dis 2015; 48: 59–61.

13.

Bryden

. Dancing with dementia. London, UK: Jessica Kingsley, 2005.

14.

Bryden

. Before I forget. New York: Penguin Random House, 2015.

15.

Tanno

. Egao de ikiru -Ninchisho to tomoni-[Living with dementia with a smile]. Tokyo, Japan: Bungeishunju Ltd., 2017.

16.

Shimosaka

. Kioku to tsunagu jakunensei ninchisho to mukiau watashitachi no koto [Connecting with memory Us facing early-onset dementia]. Tokyo, Japan: Futabasha, 2022.

17.

Bartlett

. Using diaries in research with people with dementia, https://hummedia.manchester.ac.uk/schools/soss/morgancentre/toolkits/18-toolkit-using-diaries.pdf (2011, accessed 14 November 2024).

18.

Välimäki

Vehviläinen-Julkunen

Pietilä

. Diaries as research data in a study on family caregivers of people with Alzheimer's disease: methodological issues. J Adv Nurs 2007; 59: 68–76.

19.

Swenson

. Dementia diary: a personal and professional journal. Soc Work 2004; 49: 451–460.

20.

Fuju

Yamagami

Yamaguchi

, et al. A randomized controlled trial of the “positive diary” intervention for family caregivers of people with dementia. Perspect Psychiatr Care 2022; 58: 1949–1958.

21.

Van Wijngaarden

Alma

The

. The eyes of others’ are what really matters: the experience of living with dementia from an insider perspective. PLoS One 2019; 14: e0214724.

22.

Jayalath

Ashaye

Kvavilashvili

. Carers’ diaries in dementia: is there a role in clinical practice? Alzheimers Dement (Amst) 2016; 4: 94–98.

23.

Bartlett

. Modifying the diary interview method to research the lives of people with dementia. Qual Health Res 2012; 22: 1717–1726.

24.

Woodberry

Browne

Hodges

, et al. The use of a wearable camera improves autobiographical memory in patients with Alzheimer's disease. Memory 2015; 23: 340–349.

25.

Silva

Pinho

Macedo

, et al. The cognitive effects of wearable cameras in mild Alzheimer disease–an experimental study. Curr Alzheimer Res 2017; 14: 1270–1282.

26.

Zhang

Fang

Wang

, et al.

A systematic review of the application of a diary for people with dementia: how to maximise the effect of diary use?

Psychogeriatrics 2022; 22: 269–280.

27.

Suwa

Otani

Tsujimura

, et al. The diary of a nonagenarian-centenarian woman with dementia: memory loss, life changes, and community care in Japan. Int J Nur Pract 2018; 24: e12655.

28.

Saito

. Haha no tabiji [My mother's journey]. In: Saito

(eds) Alzheimer-byo ni natta haha ga mita sekai—koto subete kanau koto toha omowanedo [The world my mother saw with Alzheimer's disease—though I never thought everything would come true]. 1st ed. Tokyo: Iwanami Shoten, 2022, pp.229–232.

29.

Ivankova

Creswell

Stick

. Using mixed-methods sequential explanatory design: from theory to practice. Field Methods 2006; 18: 3–20.

30.

Jannasch-Pennell

DiGangi

. Compatibility between text mining and qualitative research in the perspectives of grounded theory, content analysis, and reliability. Qual Rep 2011; 16: 730–744.

31.

Goto

Rudd

Lai

, et al. Leveraging public health nurses for disaster risk communication in fukushima city: a qualitative analysis of nurses’ written records of parenting counseling and peer discussions. BMC Health Serv Res 2014; 14: 129.

32.

Irwan

Kato

Kitaoka

, et al. Development of the salt-reduction and efficacy-maintenance program in Indonesia. Nurs Health Sci 2016; 18: 519–532.

33.

Maeda

Hirakawa

Muraya

, et al. Text mining analysis of newspaper editorials concerning the COVID-19 pandemic from a healthcare perspective. J Rural Med 2022; 17: 279–282.

34.

Ministry of Health, Labour and Welfare. Day service and medical care service, https://www.mhlw.go.jp/file/05-Shingikai-12601000-Seisakutoukatsukan-Sanjikanshitsu_Shakaihoshoutantou/0000168705.pdf (2017, accessed 31 January 2025).

35.

Gillies

. A memory like clockwork: accounts of living through dementia. Aging Ment Health 2000; 4: 366–374.

36.

Vargese

Jylhä

Raitanen

, et al. Dementia-related disability in the population aged 90 years and over: differences over time and the role of comorbidity in the vitality 90 + study. BMC Geriatr 2023; 23: 276.

37.

Clare

Rowlands

Bruce

, et al. I don't do like I used to do’: a grounded theory approach to conceptualising awareness in people with moderate to severe dementia living in long-term care. So Sci Med 2008; 66: 2366–2377.

38.

Cheston

Christopher

Ismail

. Dementia as an existential threat: the importance of self-esteem, social connectedness and meaning in life. Sci Prog 2015; 98: 416–419.

39.

Ryan

Rossor

Fox

. Alzheimer’s disease in the 100 years since Alzheimer’s death. Brain 2015; 138: 3816–3821.

40.

Bowen

Edgar

Hancock

, et al. The Prevalence of Visual Impairment in People with Dementia (the PrOVIDe study): a cross sectional study of 60–89 year old people with dementia and qualitative exploration of individual, carer and professional perspectives. Southampton (UK): NIHR Journals Library, 2016.

41.

Karr

Graham

Hofer

, et al. When does cognitive decline begin? A systematic review of change point studies on accelerated decline in cognitive and neurological outcomes preceding mild cognitive impairment, dementia, and death. Psychol Aging 2018; 33: 195–218.

42.

Ogawa

. “Present a compact sentence”: a method for better understanding for patients with severe Alzheimer-type dementia. Geriatr Gerontol Int 2019; 56: 82–83.

43.

Daffner

Scinto

LFM

Weintraub

, et al. Diminished curiosity in patients with probable Alzheimer's disease as measured by exploratory eye movements. Neurology 1992; 42: 320–328.

44.

Gallucci

Mazzetto

Spagnolo

, et al. Mild cognitive impairment, from theory to practical intervention: “Camminando e leggendo… ricordo”(walking and Reading… I remember), an action plan. The treviso dementia (TREDEM) registry. Ann Ist Super Sanita 2016; 52: 240–248.

45.

Suzuki

. Japanese Death rituals in transit: from household ancestors to beloved antecedents. J Contemp Relig 1998; 13: 171–188.

46.

Watanabe

Suwa

. The mourning process of older people with dementia who lost their spouse. J Adv Nurs 2017; 73: 2143–2155.

47.

Whelan

Teahan

Casey

. Fostering the resilience of people with dementia: a narrative literature review. Front Med (Lausanne) 2020; 7: 45.

48.

Nomura

Koizumi

. Strategy against aging society with declining birthrate in Japan. Ind Health 2016; 54: 477–479.

49.

Yamada

Arai

. Long-term care system in Japan. Ann Geriatr Med Res 2020; 24: 174–180.

50.

Konishi

Inokuchi

Yasunaga

. Services in public long-term care insurance in Japan. Ann Clin Epidemiol 2024; 6: 1–4.

51.

Ministry of Health, Labour and Welfare. Dementia supporter, https://www.mhlw.go.jp/stf/seisakunitsuite/bunya/0000089508.html (accessed 5 May 2025).

52.

Ministry of Health, Labour and Welfare. Dementia Supporter Caravan, https://www.caravanmate.com/ (accessed 5 May 2025).

53.

Anthonisen

Luke

MacNeill

, et al. Patient navigation programs for people with dementia, their caregivers, and members of the care team: a scoping review. JBI Evid Synth 2023; 21: 281–325.

54.

Iki

Hirata

Chibana

, et al. A case report of home-visit rehabilitation in which shared decision-making led to acceptance of respite services for a family caregiver caring for an older adult with dementia. Japanese J Commun-Based Comprehens Phy Ther 2024; 3: 104–111.

55.

Strandenæs

Lund

Rokstad

AMM

. Facilitation of activities for people with dementia in day care: a qualitative study exploring the experiences of staff. J Multidiscip Healthc 2019; 12: 503–513.

56.

Japan Association for Clinical Ethics. Ninchi-shou no hito ga sankasuru kenkyu no rinri ni kansuru teigen: ishi-kettei nouryoku ga teika shita hito wo shien suru tame ni [proposal on the ethics of research in which people with dementia participate: to support people with reduced decision-making capacity]. 1st ed. Tokyo: Herusu Shuppan, 2019, pp.14–15.

57.

Alzheimer Europe. Ethical issues in dementia research, https://www.alzheimer-europe.org/research/understanding-dementia-research/ethical-issues (2023, accessed 4 October 2025).

58.

British Psychological Society. Code of human research ethics, https://www.bps.org.uk/guideline/bps-code-human-research-ethics (2021, accessed 4 October 2025).

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