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Abstract

Dementia with Lewy bodies (DLB) is the second most common cause of dementia and is associated with unique difficulties due to its characteristic symptoms. This study aimed to identify daily life changes experienced by people with DLB due to characteristic symptoms other than visual hallucinations. Semi-structured interviews and content analyses were conducted on 13 people with DLB and their 17 family members. Qualitative content analysis identified three categories of difficulties experienced by people with DLB in daily life: body discomfort, obstacles in daily life, and psychological pain. Participants experienced not only physical changes due to symptoms such as cognitive fluctuations, parkinsonism, and rapid eye movement sleep behavior disorder but also psychological pain related to daily life difficulties. This suggests the need for care that appreciates the unique experiences of people with DLB and includes psychological care to develop appropriate individual coping strategies, rather than focusing solely on alleviating physical symptoms.

Keywords

dementia with Lewy bodies difficulties experience daily life

Introduction

Dementia with Lewy bodies (DLB) is the second most common form of degenerative dementia after Alzheimer’s disease (AD). Epidemiological and neuropathological studies estimate that DLB accounts for 7.5% of all dementia cases (Vann Jones & O’Brien, 2014). It is estimated that about 800,000 people in Japan and 1.4 million people in the U.S. are affected by DLB (Kosaka, 2012; Sabbagh et al., 2023). The characteristic symptoms of DLB include cognitive decline, early onset of hallucinations, parkinsonism, rapid eye movement (REM) sleep behavior disorder, and fluctuations in cognitive function (Ferman et al., 2013; McKeith et al., 2005, 2017). However, the timing of DLB onset and the number of symptoms vary from person to person, and people with DLB may present with multiple symptoms simultaneously (Fujishiro et al., 2013). In addition, cognitive decline is not apparent in the early stages, clinical diagnosis is limited, and the disease is often misdiagnosed as other dementias (Rizzo et al., 2018; Wei et al., 2023).

Prior research has shown that the complexity of DLB symptoms and behavioral and psychological symptoms of dementia (BPSD) have a significant impact on caregivers and people with DLB, including exacerbating caregiver burden and increasing life difficulties for people with DLB (Nicholson, 2009), and that people with DLB have a lower quality of life than those with AD (Rigby et al., 2019).

The experiences of family caregivers of people with DLB are influenced by the relationship between the caregiver and the person with DLB (Rigby et al., 2019). The caregiving burden and stress for people with DLB are reported to be higher than those for people with AD (Kawano et al., 2020; Liu et al., 2018; Svendsboe et al., 2016). In addition, factors such as caregiver stress and depression, regardless of the cause of dementia, influence the induction or worsening of BPSD in people with dementia (Kales et al., 2015); thus, knowing how to properly care for people with DLB and reducing stress can help stabilize the DLB symptoms.

A person-centered approach is important for effective dementia care and, thus, it is essential to understand the experiences and concerns of the person with dementia. However, because the symptoms of DLB are diverse, information about DLB is scarcer than that for AD, and previous research on the experiences of people with dementia has been conducted primarily among people with AD (de Boer et al., 2007; Górska et al., 2018), caregivers face difficulties in gaining an in-depth understanding of the needs of people with DLB.

Kawano et al. (2014) developed “the subjective difficulty inventory in the daily living of people with DLB,” which comprises 20 items in Japanese. Although this questionnaire evaluates treatment and support interventions, it differs from those that reveal the details of the lived experiences of people with DLB. Additionally, previous research has revealed the subjective experiences of caregivers of people with DLB (Larsson et al., 2019). However, few studies have focused on the subjective experiences of people with DLB themselves, as research on DLB has primarily focused on DLB caregivers (Bentley et al., 2021).

The changes in daily life experienced by people with DLB have already been reported but are limited to visual hallucinations (Yumoto & Suwa, 2021). However, because people with DLB experience complex changes in their lives due to various symptoms other than visual hallucinations, it is necessary to consider all changes and difficulties in daily life caused by DLB symptoms. This study aimed to clarify the changes and difficulties in daily life experienced by people with DLB due to characteristic symptoms other than visual hallucinations, such as fluctuations in cognitive function, REM sleep behavior disorder, and parkinsonism, and to offer suggestions for the care of people with DLB.

Methods

Study Design

We employed qualitative descriptive methods, which are often applied when little is known about the phenomenon being studied because it allows researchers to explore people’s core behavior, thoughts, experiences, and lives (Barker et al., 2016; Holloway & Wheeler, 2010). Qualitative descriptive studies are especially useful when a candid description of the phenomenon is required (Sandelowski, 2000), as they facilitate an understanding of the phenomena through descriptions.

As mentioned above, few previous studies have clarified the reality of daily life experienced by people with DLB, and the specifics of this reality need to be elucidated. Therefore, we conducted a qualitative descriptive study to clarify the awareness of “changes in the daily lives of people with DLB” through frank descriptions by people with DLB and their families.

Participants

Participants were people with DLB and their families living at home while receiving medical care from specialists at a hospital in one of the prefectures in the Japanese metropolitan area. The inclusion criteria for participation were as follows:

(1) People diagnosed with DLB according to the Consortium on Dementia with Lewy Bodies guidelines (McKeith, 2006) and receiving outpatient treatment by a specialist certified by the Japanese Society of Geriatrics and Psychiatry or a specialist certified by the Japanese Society of Dementia.

(2) People with DLB living at home with their families.

(3) Persons with DLB who were able to express their own experiences in words when symptoms were stable and whose doctor determined that an interview survey was possible.

Two physicians actively diagnosing and treating DLB referred people with DLB and their families who met the above conditions.

Data Collection

All interviews were conducted at the participant’s preferred location between May and September 2015. One semi-structured interview, approximately 60 min in length, was conducted with the participant and his or her family. Family members familiar with the participant’s condition were present during the interview so that they could be alerted in case of any change in the participant’s physical condition during the interview.

People with DLB who met the inclusion criteria were asked to talk about the daily life changes and difficulties they experienced because of DLB. When necessary, family members attending the interview were asked to supplement the participant’s response. Depending on the participants’ and family members’ wishes, they could be interviewed separately rather than at the same time.

Interview Guide

Have you felt any changes and difficulties in your daily life since the onset of DLB? If you have had some changes, please tell me about them.

What symptoms did you experience when these changes or difficulties occurred?

Basic information, such as the participant’s progress from disease onset up to the date of the interview, prescriptions, Mini-Mental State Examination (MMSE) scores (assessed by a clinical psychologist), the level of care required under the Japanese long-term care insurance system, and the participant’s degree of independence in daily life, was retrieved from the medical records with the consent of the participants and their families.

In the Japanese long-term care insurance system (Ministry of Health, Labour and Welfare, 2006), conditions requiring long-term care include difficulty in independently performing basic daily activities and requiring some form of nursing care. The nursing care level is determined by municipalities based on a survey of patients’ physical and mental condition and their doctors’ written opinions. The higher the care level, the greater the need for care.

According to the Japanese Ministry of Health, Labour and Welfare (2011), the level of independence in daily living for older persons with dementia, as determined by the attending physician at the time of application for long-term care insurance, is classified as: (i) “has some dementia but is mostly independent in daily living, at home and in society”; and (ii) “has symptoms, behavior, or communication difficulties that interfere with daily living but is independent if someone is careful.” Furthermore, “a” refers to difficulties outside the home, and “b” refers to difficulties both inside and outside the home. Furthermore, “M” indicates “marked behavioral and psychological symptoms of dementia and severe physical condition requiring specialized medical treatment.”

Data Analyses

Qualitative Content Analysis

We conducted qualitative content analysis, an analytical strategy applied to describe the content of expressed communication objectively, systematically, and quantitatively and classify each record unit based on meaning and content similarities, where an entire description is a context unit, and a sentence with one content is a record unit. We categorized the content according to Mayring’s (2014) method.

The interview content was recorded and transcribed verbatim. Then, we extracted and coded the record units for the question, “What daily life changes or difficulties did they face as a result of DLB symptoms other than visual hallucination?” We then examined the connections between the codes based on similarities and created subcategories and categories by increasing the level of abstraction while repeatedly deleting paraphrases of the same meaning.

To ensure the quality of the analysis, a physician specializing in DLB practice reviewed and confirmed that the results reflected symptoms attributable to DLB.

Ethical Considerations

This study was conducted according to the principles of the Declaration of Helsinki and with the approval of the ethics review boards at the Chiba University Graduate School of Nursing Ethics Review Committee (Approval Number 26–75). All participants provided written informed consent to participate in the study, and the purpose of the research, the voluntary nature of participating, the opportunity to decline at any time, and that there were no disadvantages if they chose not to participate or decide to withdraw at any time were explained. Explanations were provided in simple language and in writing, without using complicated words.

The researchers observed the participants’ condition during the interview so that they could either stop the interview or take a break if needed. People with DLB experience changes in their physical condition and cognitive function from day to day, and they may become confused depending on what they recall. Therefore, we ensured that the interviewer paid particular attention to these points. In addition, the principal physician’s judgment was obtained as to whether the participant was fit to be interviewed, and family members familiar with the participant’s usual condition were present during the interview. Participants and family members were assured that the interview would be discontinued if the family members noticed any abnormality in the participant.

This study followed the guidelines of the Consolidated Criteria for Reporting Qualitative Studies (COREQ) (Tong et al., 2007).

Results

Sample Characteristics

Thirteen people with DLB, nine men and four women (see Table 1), were included in the analysis. Seven participants were in their 70s, and six were in their 80s. The mean MMSE score measured by a clinical psychologist was 19.1 points (two participants were not assessed using the MMSE). The mean time from onset to interview was 4.3 years (SD, 3.8 years), and the mean time from diagnosis to interview was 2.0 years (SD, 0.6 years). Seventeen family members also participated, including 11 spouses, five biological children, and one child-in-law.

Table 1.

Participant Characteristics.

People with DLB (n = 13)
Sex	Male	9
Sex	Female	4
Age (years)	70s	7
Age (years)	80s	6
Mean age		77.7
Mean MMSE		19.1 (unmeasured: 2)
Symptoms other than cognitive decline	Visual hallucinations	10
	REM sleep behavior disorder	9
	Parkinsonism	8
	Severe autonomic dysfunction	4
	Cognitive fluctuation	2
	Severe sensitivity to antipsychotic agents	1
Care level in Japan’s long-term care insurance system	1	5
	2	4
	3	2
	Did not apply	2
ADL category for people with dementia	I	2
	IIa	2
	IIb	8
	M	1
Mean time from onset to interview (years)		4.3 (SD = 3.8)
Mean time from diagnosis to interview (years)		2.0 (SD = 0.6)
Family members (n = 17)
Relationship with family member	Spouse	11
	Own child	5
	Child-in-law	1
Living situation	Living together	13
Living situation	Living separately	4

Note. DLB = dementia with Lewy bodies; MMSE = mini-mental state examination; ADL = activity of daily living.

The most common DLB symptoms were cognitive decline, visual hallucinations, REM sleep behavior disorder, and parkinsonism. Daily life difficulties experienced by the participants included those of which the participant was aware of the symptoms and talked about their experiences in their own words and those where the participant was not aware of the symptoms and their family member(s) described the changes.

Daily Life Experiences in People with DLB

The following is a description of the contents for each category. Subcategories are underlined and listed and raw data are in italics (see Table 2).

Table 2.

Daily Life Experiences in People with DLB.

Category	Subcategory	Code
Discomfort in the body	Not being able to move my body in the way that I would like	Inability to grasp objects owing to lack of strength in the fingertips
		Unable to lift the leg during movement
		Difficulty in walking
		Difficulty in maintaining balance
		Difficulty in doing what my body wants to do smoothly owing to tremor
		Inability to link my will with my body movements
	Something is wrong with my body	Sometimes having trouble distinguishing between dreams and reality
		Sometimes having scary dreams at night and screaming
		Sometimes dreaming and acting out in the middle of the night, which is dangerous
		Blood pressure drops when I stand up
		Difficulty regulating body temperature
		Night sweats that make it hard to sleep because I have to change clothes a lot at night
		Feeling sick when the anti-parkinsonism medication wears off
Obstacles in daily life	Not being able to do what I used to	Difficulty speaking and thinking fluently
		Difficulty in producing words when speaking
		Difficulty in taking the right amount of medication at the right time
		No longer able to cook and clean well
		It became difficult to carry out hobby activities
		Sudden inability to do things they used to be able to do
		Made it difficult for him to move his body as he used to
	Difficult to understand	Could no longer understand and respond to questions
		Did not know how to put on clothes
		Did not know the time or date
		Would get lost in my home
	Forgetting things	Forgetting things more and more
	Forgetting things	Having difficulty communicating with their families
Psychological pain	The frustration of not being able to do what you used to be able to do	Felt like children
		The vexation of theoretical inconsistency
	Anxiety about symptom progression	Anxious about walking because of unstable standing position
		Afraid of the progression of symptoms
		Afraid to sit in a chair
		Stress caused by the progression of symptoms
	Limitations on social participation	Cannot go out casually due to the risk of falling
		Distress from not being able to work anymore
		Having my family take away my housework
		Not being able to give their grandchildren an allowance
	Feeling depressed	Loss of motivation to do things
	Feeling depressed	Mental depression

Note. DLB = dementia with Lewy bodies.

Discomfort in the Body

Not Being Able to Move My Body in the Way That I Would Like

Participants with Parkinsonism felt that they could not move their fingers as well as they did before the onset of the disease when grasping objects due to a lack of strength in their fingertips and that it was difficult to raise their legs and maintain balance when walking or climbing stairs. They also described their experience of not being able to coordinate their body movements with their intentions.

I164: This (cup with lid filled with liquid) is heavy. I have no strength in my fingertips.

D121-123: If the staircase itself is too high; it is difficult for my legs to climb up. So, if the staircase is a little lower, I can easily walk without a handrail. A 3-cm difference in height makes a big difference. Until 5 or 6 years ago, I didn’t feel that way at all, but in the last 2 or 3 years, it has been very difficult to walk up those 3-cm high stairs.

E69-83I: Standing position is not stable, and I’m worried. If I can grasp something, I will be fine. There are no handrails in the house, but it’s a small space, so there are places where I can hold on quickly.

Participants who experienced drug sensitivity described physical changes related to the drug, such as being unable to move their bodies of their own volition or feeling lightheaded when taking a newly prescribed medication.

M511: They gave me several kinds of stabilizers, and I felt something strange. I couldn’t articulate and my arms and legs were jerking.

Something Is Wrong with My Body

Participants were aware of body changes and felt something was wrong. For example, they talked about the inability to distinguish between dreams and reality due to fluctuations in cognitive function and about dreaming and acting unconsciously at night due to REM sleep behavior disorder.

L140: For example, smoke from the flames of a small fire appeared in my dream. I figured I had to put out the smoke, so I woke everyone up, but no one went to put it out, so I went to put it out. I went to put it out, but no matter how many times I put it out, it did not disappear. I woke up thinking, what am I going to do? I woke up, or rather, came back to consciousness.

In addition, participants described difficulties related to autonomic symptoms, such as low blood pressure and temperature regulation when standing up, and difficulties related to hyperhidrosis.

C11: After standing up, blood pressure drops dramatically. On one occasion, while getting out of bed to go to the bathroom, I went blank, fainted, and became incontinent while holding the doorknob.

Moreover, they shared their experiences of physical movement difficulties related to parkinsonism when their antiparkinsonian medications wore off.

A21: I can tell when the medication (anti-parkinsonism drug) wears off. I can’t be understood, and I can’t explain it well, but I feel bad. I feel worse.

Obstacles in Daily Life

Not Being Able to Do What I Used To

Participants were aware that cognitive decline made it difficult for them to speak or think, had difficulty producing words when speaking, and could no longer take their medications at the right time and in the right amount. In addition, participants mentioned that it had become difficult for them to perform household chores, such as cooking and cleaning, which they used to take for granted, and to engage in hobby activities.

Only family members mentioned that fluctuations in cognitive function sometimes made them suddenly unable to do things they could do before, and no narratives about obstacles in daily life related to fluctuations in cognitive function were obtained from the people with DLB themselves.

C213: To put it bluntly, my ability to organize my thoughts has greatly diminished. I can come up with various ideas in fragments, but when it comes time to put them all together, I get very tired.

A260: I used to take my medication by myself, but nowadays I forget (to take my medication on time) unless I am told.

G148: I broke my audio set (which was one of my hobbies) because I couldn’t figure out the wiring.

F207 (Wife): My husband has a big difference between when he is clear and when he is not. When he is normal, he is normal, but when he is not, I sense something is wrong. When that happens, he looks like he is daydreaming. It’s idiosyncratic and he often returns to normal in less than half an hour.

In addition, one participant was aware that parkinsonism had made it difficult for him to move around and carry out his hobbies and daily activities as he used to do.

K132: I can’t walk anymore. When I can walk like before, I’ll go out (for my hobby of mountain climbing), though.

Difficult to Understand

Participants were aware that due to cognitive decline, they were no longer able to understand and answer questions or how to dress appropriately. They also stated that they sometimes lost track of dates and times or got lost in the house.

M226: I lost track of dates and times. I asked my family what to do.

A292: I moved 2 months ago, and I get lost in my house. It’s hard to get to where I want to go.

Forgetting Things

. The participants were aware that their cognitive decline was causing them to forget things, which was interfering with their daily activities, and that communication with their families had become more difficult.

J220: I forget a lot of things. When I’m preparing a meal, I don’t know which one to put on the table or what I came for.

L35: What is troubling me is my forgetfulness.

Psychological Pain

The Frustration of Not Being Able to Do What You Used to Be Able to Do

. Participants said they felt like children again because cognitive decline meant they could no longer act without their family members telling them what to do next. They also experienced the difficulty of being unable to come up with the words they wanted to say, even when they wanted to speak, and expressed the vexation of contradicting their theories.

E249: I forget everything so easily, and my wife points it out to me. I don’t do it until she gets angry with me. So, I feel like a child, I think to myself.

L35: I forget words, they don’t come out, so what I say becomes less theoretical, less consistent.

Anxiety About Symptom Progression

Participants described difficulty in maintaining balance due to parkinsonism, anxiety about walking due to unstable standing posture, and fear about the progression of symptoms.

E69: I am worried about walking because it is not stable, especially when standing up. I wish I had something to hold on to.

L161: My biggest fear now is that it will affect my walking and I won’t be able to walk and that the care level will worsen from level 3 to 5. I am more afraid of the progression (of symptoms) than the progression of the level of care needed.

Some participants also felt afraid to sit in a chair because their blood pressure could drop upon standing up from a sitting position due to autonomic symptoms.

C22: A low chair is a very scary thing. Because when you stand up, there is a big difference in height, right? The strain on the body when blood pressure changes is very great.

In addition, participants talked about the stress caused by the progression of symptoms associated with progressive disease.

G128: This disease just progresses and doesn’t get better. That’s another stress.

Limitations on Social Participation

After developing parkinsonism, the participants’ walking speed and gait decreased. As a result, they mentioned their experience of being unable to go out as casually as they did before the onset of the disease because of the risk of falling.

J121: I think about going shopping or somewhere else, but I overthink it. Whether to go or not. I don’t want to fall down on the way, so I end up staying home.

Participants experienced distress due to their inability to continue working because their cognitive decline made speaking and thinking difficult. They also described their experiences of losing things more often and having family members take over household chores and other tasks. In addition, they also experienced the pain of not being able to give their grandchildren pocket money because their family now controls all their cash.

L85: I won’t be able to speak fluently, I won’t be able to think, so I won’t be able to work. That is my problem. It’s more of a mental conflict.

M468: My family has taken away my job and my money. I have no money, so I can’t even give my grandchildren an allowance to buy ice cream.

Feeling Depressed

. The participants felt they were less motivated to do things because of their physical immobility due to Parkinsonism. They also experienced mental depression because they could no longer move their bodies as much as before, making it difficult to relieve stress through hobbies.

K226: I can’t move my body and generally lose the desire to do anything.

L59: I get mentally depressed because I can’t play golf anymore, which I used to love to do, or something like that. I get dizzy on the golf course, even when I’m playing.

K150: I can no longer do my hobbies, which affects my life in many ways. It is a mental problem. We often fight as a couple, but only I can understand this vexation. Until now, I used to relieve stress through hobbies, but now I can’t do that anymore.

Discussion

This study revealed that people with DLB experience physical changes, changes in daily life, and psychological distress due to cognitive decline and characteristic symptoms such as parkinsonism and autonomic symptoms. The following sections describe the characteristics of the life changes and difficulties experienced by people with DLB and the care needed to ameliorate them.

Characteristics of Changes in Daily Life Experienced by People with DLB

DLB is characterized by symptoms such as cognitive fluctuation, visual hallucination, REM sleep behavior disorder, and parkinsonism, in addition to cognitive decline.

Participants in this study experienced physical changes, such as “I cannot move my body as I want” and “There are times when something is wrong with my body” due to the emergence of parkinsonism, REM sleep behavior disorder, and autonomic neuropathy, and described them in their own words. In addition, due to cognitive decline, fluctuations in cognitive function, and parkinsonism, participants experienced difficulties in performing daily activities that they could perform before, difficulty in understanding situations, and forgetting things.

Although previous studies have revealed the experiences of “people with dementia” without identifying the disease, they have mainly been related to cognitive decline, such as difficulty concentrating and forgetting daily events and people’s names (Aggarwal et al., 2003; Banovic et al., 2018; Clare et al., 2005). Prior research has shown that people with AD experience memory loss and difficulties with communication and verbalization as a result of cognitive decline (Chen & Lin, 2019; Johansson et al., 2015; Mazaheri et al., 2013). Participants in this study also described similar experiences of not being able to understand things, forgetting things they used to know, and having difficulty speaking and thinking fluently. They were also aware that they were no longer able to do things they could do before and that they had difficulty understanding and acting on things. These are similar to the experiences of people with AD due to cognitive decline.

However, the participants in this study experienced not only cognitive decline and physical changes but also changes in their lives due to characteristic symptoms such as motor dysfunction caused by parkinsonism, as well as REM sleep behavior disorder and fluctuations in cognitive function. Fujishiro et al. reported that REM sleep behavior disorder, orthostatic hypotension, and depressive symptoms appeared before the onset of cognitive decline in individuals diagnosed with DLB (Fujishiro et al., 2013). The mean time from onset to interview for the participants in this study was 4.3 years, and the mean time from diagnosis to interview was 2.0 years, suggesting that the participants were also aware of some physical changes before they were diagnosed with DLB.

In addition, the participants in this study experienced psychological distress, such as “frustration from not being able to perform the behaviors they used to perform,”“anxiety about the progression of symptoms,”“social life restrictions,” and “mood swings.” These were thought to be compounded by changes in their bodies caused by various characteristic symptoms and the resulting changes in their lives.

People with DLB experience a variety of symptoms and activity limitations (Larsson et al., 2019). As such, they experience different life changes compared to individuals with AD based on the characteristic symptoms because the number of symptoms and the onset time of symptoms vary from person to person in people with DLB. This suggests the need to formulate care plans for people with DLB based on not only the changes and difficulties in daily life centered on cognitive decline but also the characteristic symptoms in each individual.

Implications for Care of People with DLB

In person-centered care, which is the basic approach to dementia care, it is essential to understand the needs of the individual based on his/her life history (Clemmensen et al., 2021; Foth & Leibing, 2022; Parke et al., 2019).

In addition to cognitive decline, the participants in this study had, among several symptoms, a decline in activities of daily living (ADLs) due to parkinsonism, which caused anxiety because of symptom progression and psychological distress as a result of limited social participation. Kurisu et al. (2016) found a strong correlation between the quality of life and ability to perform ADLs, with individuals with DLB having lower quality of life scores than those with AD. Symptom management, including physical symptoms such as parkinsonism, is essential for improving ADLs in people with DLB. However, during pharmacotherapy, treating one symptom may worsen other symptoms in people with DLB, as participants in this study described their experience of worsening psychiatric and physical symptoms when prescribed new medications (Ehrt et al., 2010; Gray et al., 2015; Hershey & Coleman-Jackson, 2019). This suggests the importance of helping individuals with DLB maintain and improve their ADLs and quality of life by continuing appropriate drug therapy while minimizing side effects.

In addition, people with DLB experience psychological distress due to difficulties in maintaining a social life, such as interacting with others and going out. Having a purpose in life significantly impacts the progression of dementia (Sone et al., 2008), and social relationships have a meaningful impact on morbidity, mortality, and mental health (Boyle et al., 2012). As mentioned earlier, individuals with DLB experience cognitive decline and a decline in physical function and ADLs due to various symptoms, such as parkinsonism. However, experiences related to social participation, such as interacting with others, engaging in hobby activities, continuing to work, and fulfilling roles as a family member in the home, can also improve quality of life. Therefore, based on the life history and needs of people with DLB, it may be necessary to consider new methods of social participation, such as providing opportunities for continued social participation after the onset of symptoms and virtual social participation using technology (Gaber, 2021; Takeuchi et al., 2020; Vikkelsø et al., 2020). Each caregiver should find appropriate coping strategies based on his/her situation and needs.

Strengths and Limitations

The strength of this study is that it revealed difficulties in daily life primarily from the narratives of people with DLB themselves, rather than those of professionals or only family members.

The participants in this study were people with DLB who were being treated by physicians specializing in DLB and whose symptoms were considered controlled by appropriate medication. In addition, DLB symptoms vary from person to person. The difficulties each person experiences on a daily basis are influenced by many factors, including his/her life history, living environment, and relationships with the people around him/her. Therefore, there is a limit to identifying all of the difficulties experienced by people with DLB.

The difficulties experienced by caregivers of people with DLB may be related to various personal factors, and further information needs to be collected in the future. Guidelines for appropriate care regarding the difficulties experienced by caregivers need to be developed to enable people with DLB to continue living at home.

Conclusions

This study revealed that people with DLB experience both physical and life changes due to their characteristic symptoms, which are compounded by psychological distress. Caregivers should understand the changes and difficulties in daily life experienced by people with DLB and provide care that meets the needs of the person. In addition to the physical aspects of DLB, such as symptom management, caregivers must also pay attention to the psychological and social changes and difficulties in the lives of people with DLB and provide support to help them continue with their lives. Future research will elucidate methods of care to resolve the difficulties experienced by people with DLB.

Footnotes

Acknowledgements

We would like to thank all participants who assisted in this study. I would like to express my sincere thanks to Prof. K. Kosaka, Prof. Y. Manabe, and Ms. H. Fujii for their advice in selecting and analyzing the subjects of this study.

Author Contributions

AY conceived the idea, collected data, analyzed data, drafted, and edited the manuscript. SS contributed to reviewing the result, manuscript preparation, and manuscript revision. Finally, all have approved the manuscript and agreed on all aspects of this work.

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) disclosed receipt of the following financial suor publication of this arti/or publication of this article: This work was supported by a Grant-in-aid [Grant Number Heisei26-32] from the Yamaji Fumiko Nursing Research Fund.

Ethical Approval

The study was approved by the Chiba University Graduate School of Nursing Ethics Review Committee (approval number 26–75).

ORCID iD

Akiyo Yumoto

Data Availability Statement

The data are not publicly available due to their containing information that could compromise the privacy of research participants.

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Daily Life Experiences of People with Dementia with Lewy Bodies: A Qualitative Study

Abstract

Keywords

Introduction

Methods

Study Design

Participants

Data Collection

Interview Guide

Data Analyses

Qualitative Content Analysis

Ethical Considerations

Results

Sample Characteristics

Daily Life Experiences in People with DLB

Discomfort in the Body

Not Being Able to Move My Body in the Way That I Would Like

Something Is Wrong with My Body

Obstacles in Daily Life

Not Being Able to Do What I Used To

Difficult to Understand

Forgetting Things

Psychological Pain

The Frustration of Not Being Able to Do What You Used to Be Able to Do

Anxiety About Symptom Progression

Limitations on Social Participation

Feeling Depressed

Discussion

Characteristics of Changes in Daily Life Experienced by People with DLB

Implications for Care of People with DLB

Strengths and Limitations

Conclusions

Footnotes

Acknowledgements

Author Contributions

Declaration of Conflicting Interests

Funding

Ethical Approval

ORCID iD

Data Availability Statement

References