Understanding Family Caregivers’ Needs in Coping with the Behavioral and Psychological Symptoms of People with Dementia: A Hermeneutic

Abstract

Background:

Alzheimer’s disease and related dementias (ADRD) are progressive conditions. Family caregivers of patients, especially those caring for patients with ADRD exhibiting behavioral and psychological symptoms of dementia (BPSD), undergo significant physical and mental changes during long-term care. While most researchers have focused on the specific needs of family caregivers, the comprehensive understanding of these needs is limited. In this study, Alderfer’s existence, relatedness, and growth theory was used to develop an interview framework to systematically and comprehensively understand the needs of family caregivers of individuals with ADRD.

Objective:

The objective of this study was to understand family caregivers’ needs in coping with BPSD in individuals with ADRD, aiming to alleviate caregivers’ stress and promote their overall well-being.

Methods:

This study used a hermeneutic–phenomenological interview research design. Data were collected via remote conferences involving interviews with 17 participants selected via maximum variation sampling. The Colaizzi seven-step method was utilized, and the interview contents were analyzed using NVivo 12.0 software.

Results:

The needs of family caregivers in coping with the BPSD of individuals with ADRD could be summarized into three themes, namely existence needs, relatedness needs, and growth needs, and 10 sub-themes.

Conclusions:

The study findings provide new insights into the needs of family caregivers in coping with patients exhibiting BPSD. Family caregivers experience significant negative emotions, poor caregiving experiences, heavy caregiving burdens, and a desire for professional assistance and policy support.

Keywords

Alzheimer’s disease family caregivers hermeneutic phenomenology needs assessment nonprofessional home care

INTRODUCTION

Alzheimer’s disease and related dementias (ADRD) comprise some of the primary causes of functional decline and dependence among older adults. 1 It is projected that by 2050, the global population of people with ADRD will reach 152 million, 2 among which Chinese patients with ADRD will account for approximately 25% of dementia cases worldwide. 3 The vast majority of these patients, up to 96.9%, receive care at home. 3 The family members of these patients act as non-professional caregivers and shoulder the primary caregiving responsibilities,4,5, 4,5 providing comprehensive, continuous, and intensive supportive care. Compared with the caregivers of patients with other illnesses, those who care for patients with ADRD experience greater stress and more challenges.6 –9 Over 90% of patients with ADRD experience behavioral and psychological symptoms of dementia (BPSD) such as agitation, aggression, calling out repeatedly, sleep disturbances, wandering, and apathy. 10 BPSD is associated with cognitive and functional deterioration in patients with ADRD and with an increased caregiver burden,11,12, 11,12 and its negative impact on both parties intensifies as the patient’s condition progresses.13,14, 13,14 Patients’ BPSD also increases their caregivers’ risk of depression and perception of stress. 15 Additionally, caregivers may experience burnout when confronted with aspects of patients’ BPSD, such as agitation, resulting in a decreased quality of care. 16 Research has suggested that patients’ BPSD can exacerbate caregivers’ needs, such as the need for respite and to cope with BPSD while caring for patients. 17

Caregivers play a vital role in providing care for patients with ADRD and supplying researchers with patient-related information, thus contributing to the well-being of both patients and the field.18 –21 With increasing attention from researchers, caregivers’ stress and burden have become an issue that cannot be ignored, particularly among the caregivers of patients with BPSD.22 –24 Research has suggested that a failure to meet caregivers’ needs for assistance can have negative consequences, such as declining physical and mental health.25 –27 However, even after receiving assistance, nearly two thirds of caregivers of patients with ADRD report not knowing how to cope with the patients’ BPSD. 28 Currently, the support offered to caregivers of patients with ADRD differs from the support needed.28,29, 28,29 A lack of understanding of caregivers’ needs increases the likelihood that their needs will not be met during caregiving.10,28,30,31 , 10,28,30,31 An accurate assessment of these needs can facilitate the development and provision of appropriate solutions to meet unmet needs, which would benefit both patients and caregivers. 32 Previous research on understanding caregiver needs has two main shortcomings. First, the sample populations were mainly recruited in Western countries, and thus an understanding of the needs of Chinese caregivers in coping with the BPSD of patients with ADRD is lacking. 30 Second, the current understanding of caregivers’ needs is largely influenced by quantitative methodological approaches,33,34, 33,34 whereas qualitative approaches are less commonly used, and most studies concentrate on specific needs.30,35, 30,35 These limitations can impede a comprehensive assessment of caregivers’ needs.

Therefore, interview guidelines for the current study were developed based on Alderfer’s existence, relatedness, and growth (ERG) theory, which was proposed in 1969 as a new humanistic needs theory. Alderfer posited that individuals have three core needs: existence needs, relatedness needs, and growth needs. 36 Alderfer argued that the satisfaction of lower-level needs is not a prerequisite for the emergence of higher-level needs. In addition to being simpler and allowing for flow between human needs while comprehensively covering those needs, Alderfer’s ERG theory 36 is closer to reality than Maslow’s hierarchy of needs as it recognizes the diversity of needs, changing needs, and the simultaneous existence of multiple needs. In addition, ERG theory proposes the frustration–regression hypothesis, which suggests that when high-level needs (e.g., growth needs) cannot be satisfied, people will regress to lower-level needs (e.g., relatedness or existence needs). Accordingly, it can explain why some people turn to the satisfaction of lower-level needs when their high-level needs are blocked. Therefore, it can better explain human behavior. In ERG theory, existence needs pertain to basic survival, while relatedness needs involve the desire to maintain important interpersonal relationships and growth needs encompass individual self-development and self-actualization. The ERG theory provides important insights into and facilitates a comprehensive understanding of individuals’ needs, motivations, and behaviors, facilitating mutual growth and development for individuals and organizations. Guided by ERG theory, in this study, the needs of family caregivers in coping with patients’ BPSD were explored through semi-structured in-depth interviews.

The objective of this study was to understand family caregivers’ needs in coping with BPSD in individuals with ADRD, aiming to alleviate caregivers’ stress and promote overall well-being.

METHODS

Design

A hermeneutic–phenomenological interview study.

Research methods and theoretical framework

This study is guided by ERG theory, which provides broader coverage of human needs than Maslow’s hierarchy of needs. Based on the theoretical framework, a research team consisting of nurses, physicians, and researchers worked together to develop an interview guide and directed the generation of themes to comprehensively explore the needs of caregivers in responding to individuals with ADRD.

Hermeneutic phenomenology, which is sometimes referred to as interpretive phenomenology, goes beyond merely describing a phenomenon and involves exploring and conveying its meaning in the context of everyday life. 37 Using this approach, researchers seek to uncover the meaning and central structures, or essence, of a participant’s lived experience with a phenomenon and the contextual forces that shape it. 38 This approach also enables an understanding of the deeper human experience that lies beneath the surface level of consciousness and how this experience is influenced by the individual’s reality or the world he or she experiences before reflection. 39

In this study, semi-structured interviews are used, an approach that involves the following main steps: arranging the time and place of the interview, asking whether it is permitted to record the interview before the interview starts, and carrying out the interview based on an outline. 40 The researcher moderately controls the general direction of the interview content to prevent the interviewee from deviating from this content. Hermeneutic phenomenology is characterized by double reading and situational analysis, i.e., the researcher uses reflection and interpretation to understand how the interviewee makes sense of their experience while considering the interviewee’s specific situation and context. 41

This study uses Colaizzi’s 42 seven-step method to analyze qualitative research data. This approach divides the process of analyzing of qualitative research data into seven steps to safeguard the truthfulness, accuracy, and trustworthiness of phenomenological research. Colaizzi’s seven-step method includes the following steps: 42 (1) read carefully to become familiar with the text; (2) re-read the text to identify significant statements; (3) code all significant statements to formulate meanings; (4) summarize the formulated meanings into theme clusters; (5) describe the investigated phenomenon exhaustively; (6) produce the fundamental structure; and (7) return to the participants to verify the results. A flow chart of the steps is shown in Fig. 1. As early as 2009, the combination of hermeneutic phenomenology and Colaizzi’s seven-step method was widely used in aging and caregiving research. 43 This approach is used in this study with the aim of comprehensively understanding caregivers’ needs while interpreting their expressed and described needs.

Fig. 1

Colaizzi’s seven-step method flow chart. All authors jointly engaged in Colaizzi’s seven-step analysis method according to the following steps. (1) Carefully and repeatedly read each caregiver’s final text to fully familiarize oneself with and understand what the caregiver was providing. (2) Synthesize the content and context of the data to identify all important informational and linguistic data related to the caregiver’s response to the patient’s BPSD-related needs. (3) Code sentences, key words, and concepts that recur in the caregiver’s response to the patient’s BPSD-related needs. (4) Based on a thorough understanding, summarize the coded content, look for meaningful concepts, and develop a prototype theme. (5) Summarize the process in step 4 by providing a detailed description of each theme generated in that step and extract and incorporate typical original statements from the caregiver. (6) Continue summarizing and organizing the data by placing similar themes and their descriptions together for repeated comparisons, and construct a short and meaningful phrase or sentence to form the final theme. (7) Return the resulting theme structure to the caregiver for validation and ask whether it captures their true experience to ensure the accuracy of the results; if there is any bias, reanalyze the data step-by-step from step 1. These seven steps were performed sequentially, and consensus was reached before proceeding to the next step. When disagreements arose, the final results were determined through discussion within the research team. Throughout the process, the research team held three discussions.

Research team and process feedback

The research team has a background in geriatrics and AD research. Following qualitative research training provided by the project team, the researchers conducted in-depth semi-structured interviews with the participants. To ensure open and candid discussions between the researchers and participants, and to minimize the influence of healthcare professionals on the participants’ responses and the researchers’ understanding of the phenomena, 44 the researchers conducted the interviews in the capacity of ADRD scholars. The participants were informed that the interviews would not affect their medical benefits, posed no other risks, and would be kept completely confidential. This study was standardized according to COREQ, a reporting standard for qualitative studies, as detailed in Supplementary Table 1.

Participants

From July to September 2023, the elderly psychiatric outpatient department of specialized psychiatric hospital and the neurological outpatient department of a tertiary comprehensive hospital in Shandong province were selected for the study using maximum variation sampling. The caregivers of patients diagnosed with ADRD with BPSD were chosen as respondents. The inclusion criteria for respondents were as follows: (1) caregivers responsible for patients meeting the criteria of the International Statistical Classification of Diseases and Related Health Problems, 11th revision (ICD-11) 45 and exhibiting BPSD; (2) primary caregivers for the patients; (3) native Mandarin speakers with normal hearing and ability to communicate verbally; and (4) provision of informed consent and voluntary participation. The exclusion criterion for respondents was an inability to cooperate with the researchers due to cognitive impairment, a history of major mental illness, or other factors. The sample size was determined based on data saturation principles, 46 e.g., two additional respondents were included when no new information or new themes that could be used for coding emerged. A total of 20 respondents were included, with preliminary interviews conducted for three respondents and formal interviews for 17 respondents. There were no dropouts or repeated interviews among the respondents. To protect the privacy of the respondents, those who participated in formal interviews were represented by codes P1–P17. The demographic data of the caregivers and patients are presented in Table 1.

Table 1A

Characteristics of caregivers. (n = 17)

Interview	Age	Gender	Patient–caregiver relationship	Whether they live	Employment
				with the patient	status
P1	57	Male	Mother–son	Yes	Unemployed
P2	33	Female	Mother–daughter	No	In work
P3	58	Female	Mother–daughter	Yes	In work
P4	50	Female	Mother-in-law–daughter-in-law	No	In work
P5	44	Female	Mother–daughter	No	In work
P6	58	Male	Father–son	No	In work
P7	45	Male	Mother–son	Yes	In work
P8	50	Female	Spousal	Yes	Retired
P9	51	Male	Father–son	No	In work
P10	43	Female	Mother–daughter	No	In work
P11	55	Female	Mother–daughter	No	In work
P12	53	Female	Father–daughter	Yes	Retired
P13	54	Female	Mother–daughter	Yes	Unemployed
P14	32	Male	Mother–son	Yes	In work
P15	25	Female	Grandparent–grandchild	Yes	In work
P16	40	Male	Mother–son	No	In work
P17	33	Male	Mother–son	No	In work

Table 1B

Characteristics of patients. (n = 17)

Older person (OP)	Age	Gender	Type of dementia	Type of medical insurance	ADL	MMSE	NPI
OP1	85	Female	Vascular dementia	Urban medical insurance	100	18	21
OP2	71	Female	Alzheimer’s disease	Rural cooperative medical care	100	22	10
OP3	87	Female	Alzheimer’s disease	Rural cooperative medical care	85	1	36
OP4	82	Female	Alzheimer’s disease	Urban medical insurance	100	15	60
OP5	70	Female	Alzheimer’s disease	Medical insurance for a different location	55	15	56
OP6	78	Female	Alzheimer’s disease	Rural cooperative medical care	90	15	17
OP7	71	Female	Alzheimer’s disease	Rural cooperative medical care	100	13	8
OP8	57	Male	Vascular dementia	Rural cooperative medical care	65	7	31
OP9	82	Male	Alzheimer’s disease	Rural cooperative medical care	100	17	16
OP10	67	Female	Alzheimer’s disease	Rural cooperative medical care	100	22	8
OP11	77	Female	Alzheimer’s disease	Urban medical insurance	85	13	92
OP12	80	Male	Mixed dementia	Rural cooperative medical care	65	8	32
OP13	84	Female	Alzheimer’s disease	Rural cooperative medical care	50	11	78
OP14	63	Female	Dementia with Lewy bodies	Urban medical insurance	65	0	84
OP15	82	Female	Mixed dementia	Urban medical insurance	0	0	34
OP16	67	Female	Alzheimer’s disease	Rural cooperative medical care	10	0	51
OP17	65	Female	Alzheimer’s disease	Rural cooperative medical care	65	3	29

Data collection

Upon enrolment, the participants were given an explanation of the research purpose and significance. To ensure their comfort and sense of security during the interview process, the participants were provided two options for the interview setting: the first was a meeting within the wards located in the outpatient department of each hospital, and the second was a remote meeting. All participants chose the latter option, and thus the in-depth semi-structured interviews were conducted via remote meetings. The interview topics mainly covered three aspects: (1) What physical and mental health concerns do you experience when caring for your patients? (2) What kind of support do you expect from your family, neighbors, friends, social relations, etc.? (3) In what ways have you hoped to improve yourself since you began taking care of the patients? The content of the interview outline is detailed in Supplementary Table 2.

Before the interviews began, consent to record the dialogue was obtained from the participants. The interviews were conducted in a quiet environment without interruptions. The total duration of the 17 interviews was 802 minutes, with an average of 41 minutes per interview. Throughout the process, emotions, special sounds, and other phenomena were documented through changes in tone and intonation: for example, if the interviewee suddenly became emotional, cried, or sighed when responding to a particular item, this indicated that the item was of special significance to the interviewee. Within 24 hours after the interviews concluded, the recordings were transcribed into text, which was then reviewed and edited by two researchers to ensure that it was coherent and retained the original meaning of the paragraphs. The corrected transcript of the text was then returned to the participants to verify the accuracy of their expressions and form the final text.

Data analysis

All of the authors employed Colaizzi’s seven-step method to develop a preliminary understanding of the overall data. Three coders (XHZ, KYC, NS) independently coded the final texts throughout the process using the steps and NVivo 12.0 software. Inter-coder reliability was computed using SPSS 25.0. Cohen’s kappa coefficient is utilized to describe the agreement between the coders.

The kappa values between coder XHZ and coder KYC, between coder XHZ and coder NS, and between coder KYC and coder NS were 0.924, 0.925, and 0.850, respectively. These values demonstrate good pairwise consistency among the coders, with values closer to 1 indicating better agreement. The level of agreement between each pair of coders was significant (p < 0.05). The overall inter-coder reliability among the three coders was 0.897, indicating a high level of consistency.47,48, 47,48 Detailed information is provided in Supplementary Table 4. The themes and sub-themes that emerged from the interviews are presented in Table 2. Examples of coding of the themes and sub-themes are detailed in Supplementary Table 3.

Table 2

Presentation of themes and sub-themes

Themes	Number of code references	Sub-themes	Interview no.	N/17
Existence needs	157
		The shadow of the disease: the fear and anxiety of the heart	9, 11, 13, 17	4
		Anticipatory grief: the anticipatory pain of the heart	5, 11, 17	3
		A heavy burden to bear: the struggles and stresses of the heart	1, 2, 3, 4, 5, 6, 8, 10, 11, 12, 13, 14, 15, 16, 17	15
		Life’s challenges: when confronted with survival pressures, the quality of life deteriorates	1, 3, 5, 7, 8, 9, 10, 11, 12, 13, 14, 16	12
		Outdated mindset: a relic of bygone eras in the realm of thought	3, 11, 15, 16, 17	5
Relatedness needs	143
		Warm haven: family support is the strongest backing	1, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17	16
		Desired guardrail: expectation for help from outside support systems	1, 2, 4, 5, 6, 8, 9, 10, 11, 12, 14, 15, 16, 17	14
		Seeds of hope: a thirst for policy support	3, 4, 5, 6, 7, 9, 10, 11, 16, 17	10
Growth needs	116
		Nutrition for the mind: the pursuit of learning	1, 3, 4, 5, 7, 9, 10, 11, 14	9
		Garden of the mind: the aspiration and exploration of self-realization	1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17	17

Quality control

Quality control measures were implemented rigorously throughout the study as follows. (1) To prepare for the study, the researchers engaged in consultations with leading medical professionals, nursing experts, psychologists, and experienced caregivers to gain diverse perspectives and broaden their minds. (2) The interview outline was developed based on a comprehensive literature review and theoretical framework, and the final version of the outline was formed through preliminary interviews with three interviewees after expert consultation in the relevant fields. (3) The participants were meticulously selected based on predetermined inclusion criteria, using maximum variation sampling to enrich the data sources, enhance the credibility of results, and ensure applicability. (4) To ensure data authenticity, the entire interview process was recorded. (5) To verify the data, two researchers transcribed the recordings into text and provided the modified transcripts to participants for verification, ensuring the accuracy and completeness of the data. (6) The entire data analysis process was collectively discussed by all authors. Discrepancies were resolved through group discussions in which a neutral stance was maintained to mitigate subjective biases and emotional interference. Feedback validation and cross-validation methodologies were employed before finalizing the themes to ensure the reliability of the results. (7) Independent coding was performed by three coders to enhance the credibility of the results; a high level of inter-coder agreement was achieved. (8) Regarding the research team’s qualifications, all researchers involved had received qualitative research training and held a master’s or higher degree.

Ethical considerations

The study was conducted in accordance with the Declaration of Helsinki and received approval from the University Ethics Committee (approval number: 2023-R-094). The participants were informed about the purpose and significance of the research when they were recruited for enrolment and were provided with a written informed consent form upon agreeing to participate. They were also informed of their right to withdraw from the study at any time. To protect the privacy of the participants, their names were encoded.

RESULTS

Encoding and analyzing the final texts from the perspective of ERG theory revealed that the caregivers’ existence needs when addressing BPSD in dementia patients were reflected through self-descriptions of their physical and mental challenges during caregiving. Although caregivers may not explicitly articulate their needs, the portrayal of their challenges reveals their inner desires and needs. 49 Relatedness needs, which manifested in the caregivers’ desire for connection with the outside world (or others) or the hope that support will be received from external sources (or others) to alleviate the stress or burden of caregiving, were particularly evident in the caregivers’ understanding of their family members, support from society, and reliance on policies. Notably, there was a strong desire for policy support. Growth needs were represented by the caregivers’ spontaneous desire to acquire ADRD-related knowledge or skills and to enhance their caregiving experience, thus fostering self-development and fulfillment.

Existence needs

The shadow of the disease: The fear and anxiety of the heart

Caregivers’ distress in the face of illness primarily arises from two dimensions. First, the participants expressed a pervasive apprehension regarding BPSD. In the eyes of family members, who are laypeople, BPSD symptoms such as seeing people or things that others cannot see, hearing sounds that others cannot hear, and behaving strangely are the same as the clinical manifestations of people with psychosis. Caregivers find themselves grappling with the unsettling reality of caring for individuals who exhibit behaviors incongruent with their previous selves. Second, owing to the familial hereditary predisposition of AD, the offspring of patients harbor concerns about inheriting a genetic susceptibility to the disease, thereby increasing their vulnerability to illness and evoking manifestations of anxiety.

“My mother always saw dead relatives, and at night during her hospitalization, she had to pull back the curtains to walk through the window; it was weirdly scary.” (P11, age: 55 years, female) (Older person 11: Hallucinations, anxiety, depression, agitation, sleep disorders, behavioral abnormalities).

“My father and my grandfather both have dementia, and I’m in my 50 s this year. Can this disease be prevented in advance?” (P9, age: 51 years, male) (Older person 9: behavioral abnormalities, anxiety).

Anticipatory grief: The anticipatory pain of the heart

Anticipatory grief (AG) was first proposed during World War II and is defined as an intensely strong grief reaction exhibited before the loss of a loved one. 50 In recent years, with the increasing prevalence of ADRD, AG increasingly has been considered in research involving the caregivers of patients with ADRD and cognitive impairment.51,52, 51,52 Throughout the progression of ADRD, caregivers witness firsthand the gradual deterioration of cognition, self-care abilities, social interactions, and overall well-being, especially in patients exhibiting behavioral and psychological symptoms, leading to the manifestation of caregivers’ AG.

“The thought of my mother slowly dying a debilitating death and being in a more serious condition made me panic, and I couldn’t accept such a brutal image.” (P5, age: 44 years, female) (Older person 5: eating disorders, depression, apathy, delusions, hallucinations).

A heavy burden to bear: The struggles and stresses of the heart

Patients with ADRD accompanied by BPSD are unable to live independently. Their caregivers face significant physical and psychological challenges due to prolonged caregiving. Severely affected patients rely heavily on their caregivers, creating a substantial caregiving burden. Apart from the physical toll (e.g., exhaustion, declining health, personal neglect, sleep disturbances), caregivers endure considerable mental strain, including feelings of insecurity, depression, anxiety, 3 and emotional volatility, and a loss of confidence in future life. This burden is particularly pronounced for spousal caregivers, who may struggle due to their own advancing age and declining physical abilities. In many families, however, the responsibility of care typically falls upon the patient’s offspring, who are burdened not only by the need to earn money to support the family but also to take care of the patient, amplifying their psychological distress.

“The thought of my father’s body not being able to cope while caring for my mother, and the fear of my father’s body wearing out as well.” (P17, age: 33 years, male) (Older person 17: eating disorders, agitation, anxiety, depression, sleep disorders, hallucinations, delusions, behavioral abnormalities).

“We three sisters often say we can’t continue caring for our mother like this, we can’t bear it anymore. We really can’t bear it (crying).” (P13, age: 54 years, female) (Older person 13: agitation, irritability, hallucinations, apathy, sleep disturbances).

“When I think of something sad, I cry silently, the kind of tears that linger in my eyes while I’m typing at work. I felt depressed during that time.” (P15, age: 25 years, female) (Older person 15: eating disorders, anxiety, apathy, delusions).

Life’s challenges: When confronted with survival pressures, the quality of life deteriorates

After taking on the responsibility of caring for a patient, a caregiver’s regular routines are disrupted, which affects various aspects of their lives in various ways: work being hindered, a declining quality of life, strain on the family, and compromised decision-making. A significant portion of the upheaval and disintegration in their lives stems from the responsibility of caring for the patient.

“When work conflicts with taking care of my mother, I postpone work to take care of her.” (P7, age: 45 years, male) (Older person 7: Sleep disorders, hallucinations, behavioral abnormalities).

“I currently have neither the time nor the mood every day, and the biggest impact on me is my state of life.” (P12, age: 53 years, female) (Older person 12: anxiety, depression).

“When I take care of my mother, I take less care of my family, and all my energy is focused on my mother.” (P11, age: 55 years, female) (Older person 11: anxiety, depression, agitation, hallucinations, sleep disorders, behavioral abnormalities).

“I had planned to stir-fry three dishes today, but feeling a bit tired and distracted, I ended up making only two dishes.” (P8, age: 50 years, female) (Older person 8: apathy, depression, irritability, sleep disorders).

Outdated mindset: A relic of bygone eras in the realm of thought

Due to traditional cultural beliefs about gender differences, caregivers of the same gender as the patient experience substantially heightened caregiving stress. Regardless of whether the stress exceeds what the caregiver can endure, there is a perception that caregiving is more convenient when provided by someone of the same gender as the patient, and thus the caregiver feels obligated to provide additional care. Furthermore, the traditional Chinese cultural notion of “raising sons to provide for old age” places the responsibility of caring for elderly parents primarily on sons, leading son caregivers to believe that their caregiving stress is justified even if they have sisters.

“When our elderly mother falls ill, I (the daughter) typically take on more responsibilities because many aspects of caregiving are easier for me compared to my brother, who occasionally steps in to assist.” (P11, age: 55 years, female) (Older person 11: anxiety, depression, agitation, hallucinations, sleep disorders, behavioral abnormalities).

“In rural areas, it’s usually the sons who take care of older people, so it’s really helpful if my sister can share the burden of caring for our mother.” (P16, age: 40 years, male) (Older person 16: elation, behavioral abnormalities, sleep disorders).

Relatedness needs

Warm haven: Family support is the strongest backing

The interviewees expressed a belief that home is where they find their roots and a sense of belonging. When caring for older patients with ADRD, the support and understanding of family members can provide caregivers with a haven of warmth and strength. The interviewees firmly expressed that unity and affection among relatives are essential for overcoming challenges, as everyone has grown and been nurtured within the family. Therefore, the family is of paramount importance.

“Fortunately, my father was at home to care for my mother, and many of the challenges were effectively managed without significantly disrupting my life or causing excessive distraction, for which I am grateful.” (P2, age: 33 years, female) (Older person 2: behavioral abnormalities, anxiety, depression).

“Although my sister is in another city, so her assistance in caregiving might be limited, she helps alleviate the financial burden of taking care of our mother, which comforts me.” (P14, age: 32 years, male) (Older person 14: agitation, anxiety, depression, sleep disorders, hallucinations).

Desired guardrail: Expectation for help from outside support systems

When caregivers feel stressed or encounter difficulty in dealing with a caregiving issue related to the patient, their instinct is to seek help from external sources. This inclination is understandable in any challenging situation, because the person facing the challenge seeks to overcome obstacles and break impasses while recognizing the limitations of their abilities. Seeking assistance is a universal and natural response. The desire for external support can be categorized primarily into three aspects: professional assistance, emotional support, and social support.

In this study, 47% of the caregivers expressed a desire for professional assistance. A demand for guidance on disease management and medication usage was specified.

“I would like to know the latest developments regarding the disease and if there are any medications besides memantine for treatment. Additionally, I’m curious if it’s feasible to regularly change medications, similar to how it’s done for hypertension, and I’d appreciate some guidelines.” (P10, age: 43 years, female) (Older person 10: anxiety, depression, sleep disorders, hallucinations, delusions).

“I hope for an online or offline platform where I can communicate with professional doctors. It would be helpful to have timely feedback, consultation, and effective responses for sudden symptoms or worsening conditions.” (P17, age: 33 years, male) (Older person 17: eating disorders, agitation, anxiety, depression, sleep disorders, hallucinations, delusions, behavioral abnormalities).

Emotional support is also crucial. Caregiving becomes extremely draining in an environment characterized by depression or an inability to self-regulate. Clinical observation suggests that patients seeking treatment for ADRD in hospitals are often accompanied by caregivers whose mental or physical well-being is far from optimal. This lack of a promising mental state or physical condition makes caregivers resemble those in need of care. 53

“The hope for professional guidance in the psychological aspect is essential.” (P1, age: 57 years, male) (Older person 1: anxiety, hallucinations, delusions, agitation).

Social support helps buffer individuals from the harmful effects of negative events and stressors, enabling them to maximize the benefits of positive events. A prevalent concept in social support is the extent to which people in our social networks respond to our needs and the perceived availability of support to meet our needs in the future.54 –56 The caregivers of ADRD patients seek social support to alleviate their caregiving burden and psychological stress.

“If I work overtime, I need other people to go over and share the pressure of caring for my mother, and I hope that there is a public service organization in the community to take over the occasional care of the patients in our place.” (P16, age: 40 years, male) (Older person 16: elation, behavioral abnormalities, sleep disorders).

Seeds of hope: A thirst for policy support

The caregivers expressed hope for policy support, especially that the government would place greater emphasis on diseases such as ADRD and increase support for them. They firmly believed that policy assistance would be the most substantial and quickest means of help for them because they considered the level of policy support as reflective of the overall societal response.

“Our family’s condition is a little better. I saw a lot of people who can’t afford treatment: they are miserable, and the reimbursement process is very cumbersome and trivial. There are a lot of restrictive items. I hope to get some policy help to reduce the pressure of the family’s medical care.” (P5, age: 44 years, female) (Older person 5: eating disorders, depression, apathy, delusions, hallucinations).

“In our county, there are no nursing facilities that accommodate patients with ADRD accompanied by BPSD. We hope that our county will have such nursing facilities because if we go to nursing facilities outside our area, we are not covered by local medical insurance, and there are many benefits we cannot enjoy. Additionally, there is no way to claim reimbursement for out-of-town medical expenses within the province.” (P16, age: 40 years, male) (Older person 16: elation, behavioral abnormalities, sleep disorders).

Growth needs

Nutrition for the mind: The pursuit of learning

Caregivers often feel inadequately attuned to early changes in the symptoms of ADRD, primarily due to their limited understanding of the disease. This limitation leads to a decline in medication adherence and a delay in seeking medical attention, among other issues. For caregivers tasked with long-term care, continuous learning about ADRD is an essential skill. In this era of abundant information, caregivers crave accurate and timely updates on ADRD-related matters to better cope with challenges.

“Since my mother is on antidepressants herself, I think it’s the medication that suppresses neural activity, leading to poor memory and illogical problems. I don’t think it’s a dementia problem at all and would like to be updated on this in the future.” (P10, age: 43 years, female) (Older person 10: anxiety, depression, sleep disorders, hallucinations, delusions).

“After seeing a WeChat post from her colleague, my mother became convinced that the person was out to harm her. Initially, we thought it was just a misunderstanding between them and didn’t consider it a sign of illness at the time.” (P11, age: 55 years, female) (Older person 11: hallucinations, delusions, anxiety, depression).

Garden of the mind: The aspiration and exploration of self-realization

There are three main types of self-actualization. The first involves positive face-to-face active growth, the second entails negative passive growth due to the influence of the surrounding environmental circumstances, and the third type combines the first two types. Learning to face and deal with emergencies with a positive mindset is crucial in the long-term care of a person with dementia. However, the problem may be too difficult or insoluble, even after facing it with a positive mindset, and one must slowly learn to compromise as when faced with difficulty, a measure that must be taken when nothing else can be done. Caregivers who experience both positive and negative coping styles struggle to find balance in their coping process.

“I’m more open-minded: I don’t give myself a hard time, I take breaks when I’m tired, and I work as much as I can.” (P4, age: 50 years, female) (Older person 4: delusions, irritability).

“I place a strong emphasis on learning about this aspect. I often consult relevant materials, watch documentaries, movies, and so on to understand the disease better.” (P10, age: 43 years, female) (Older person 10: anxiety, depression, sleep disorders, hallucinations, delusions).

“I have to be strong. If I’m not strong, the family falls apart. Sometimes I have to tough it out. I may not feel happy inside, but I still smile in front of my family. I often tell them, ‘I’m like an invincible little cockroach.”’ (P13, age: 54 years, female) (Older person 13: agitation, irritability, hallucinations, apathy, sleep disturbances).

DISCUSSION

Three themes were identified to more fully explain caregivers’ needs in coping with BPSD when providing care for patients with ADRD: existence needs, relatedness needs, and growth needs. These needs are consistent with the three core needs of ERG theory. The results show a descending order of the numbers of existence needs, relatedness needs, and growth needs, which aligns with the findings of the scoping study by Queluz et al. 57 These results are sensible, suggesting that individuals may prioritize their higher-level needs only after fulfilling the most basic existence needs. However, in this study, all respondents expressed a desire for each level of need, consistent with ERG theory, which emphasizes that the satisfaction of lower-level needs is not a prerequisite for the emergence of higher-level needs.

Among the existence needs, other researchers have emphasized the importance of AG, a heavy caregiving burden, and a reduced quality of life for caregivers.58 –60 In contrast to other illnesses, the family caregivers of persons with ADRD with BPSD have a unique fear of the disease as they perceive BPSD as similar to the behavior exhibited by psychiatric patients, which elicits fear of the symptoms. This finding suggests a need for enhanced health education on the clinical symptoms of ADRD in clinical practice. Additionally, adult children caregivers recognize the harm posed by the disease to both the patients and caregivers, and this harm elicits a fear of developing ADRD themselves, consistent with findings by Watson et al., who reported dementia as the most feared illness among individuals aged 65 years and older. 61 Attention should also be paid to the influence of cultural beliefs on caregivers. A study in the United Kingdom confirmed the importance of formulating culturally relevant recommendations for managing diet at home that are based on the experiences of minority ethnic caregivers and patients with ADRD. 62 As an example, in the current study, although P3 (the patient’s daughter) consistently undertook the responsibility of caregiving for her mother, government subsidies were claimed and controlled by her brothers, a situation that she considered inappropriate as she was the patient’s daughter. P16 (patient’s son) expressed a belief that in rural areas, sons should take care of the elderly, and he found solace in sharing the responsibility with his sister. While the notion of raising sons to support parents in old age may provide some level of security for patients with ADRD, gender bias and other cultural beliefs create challenges for caregivers. This situation underscores the importance of enhancing caregivers’ spirituality to maintain a balance between caring for patients with ADRD and their own well-being.

In terms of relatedness needs, the caregivers mentioned support from family members and external assistance to a similar extent. However, they also expressed a strong desire for policy support, particularly in terms of streamlining reimbursement procedures and relaxing reimbursement criteria, which may be linked to their financial interests. Additionally, the caregivers demonstrated a desire for timely professional assistance, possibly due to limitations on their access to professional help due to geographical constraints. 63 As reported in other studies, the widespread use of the internet has positively impacted people’s search for health-related information.64,65, 64,65 This observation suggests that the internet could be used advantageously to simplify reimbursement processes for individuals. Furthermore, establishing online channels for communication between medical professionals and patients could provide both patients and caregivers with prompt and convenient medical consultation services. These suggestions underscore the importance of utilizing the internet to address healthcare needs effectively.

Regarding growth needs, all of the caregivers expressed a desire for self-actualization, indicating that caregivers in long-term caregiving environments hope for the ability to handle sudden situations involving patients with ADRD and to learn how to positively transform their emotions when the patients’ behaviors affect their own psychological state. In other words, they wish to achieve self-fulfillment while caring for older adults with ADRD. However, caregivers are limited by their level of education or their means of understanding the disease and are not able to learn about the disease systematically and comprehensively. 30 This suggests that clinicians should not only focus on treating the symptoms of patients with ADRD but also provide caregivers with health education on this aspect to supplement their lack of caregiving knowledge.

However, this study also found that the needs most desired varied greatly between family caregivers, and this variation could be attributed to differences in the caregivers’ understanding of ADRD, their perspectives on life, their coping strategies, or the condition of the elderly person they were caring for. For example, in this study, some caregivers expressed a belief that dementia is a manifestation of a person’s old age; others were bound by traditional culture or concerned about having a familial genetic history of disease. Some caregivers had learned that long-term caregivers need to know how to maintain a comfortable life for themselves, and some lamented that only filial piety remained after caring for an older person with ADRD. The complexity of the environment surrounding the caregiver affects the innermost needs that they wish to have fulfilled; therefore, it is not difficult to understand how the diversity of caregiving needs is enriched by differences between caregivers. However, a study showed that the needs of family caregivers of people with BPSD were not met during difficult behavior management interventions. 10 This finding may have been related to the wide spectrum of caregivers’ needs in responding to a patient’s BPSD, differences in caregivers’ surroundings, and the lack of a systematic support program. 66 Addressing this issue will require a bottom-up approach that begins with a comprehensive understanding of different caregivers’ needs and implementing both individualized and systematic interventions tailored to each caregiver.

Our analysis provides a comprehensive and systematic explanation of the diversity, complexity, and significance of caregivers’ needs. Understanding the caregiving process from the perspective of family caregivers offers new insights into how caregiving stress can be alleviated and holistic well-being promoted.

Strengths and limitations

The strength of this study lies in its comprehensive assessment of the needs of family caregivers in coping with BPSD in patients with ADRD, rather than focusing solely on specific needs. The study population was recruited in China, where 25% of the global population of patients with ADRD resides, and thus the study findings validate and supplement the understanding of the needs of family caregivers of patients with dementia. However, the study’s limitations include the need to further supplement the results through studies with different designs. Additionally, all interviewees were recruited from the same country and had the same cultural background, which may have introduced bias due to differences in cultural and geographical environments compared with the environments of caregivers of ADRD patients in other countries.

Conclusions

ADRD has emerged as a global public health concern, garnering increasing attention from researchers. However, equal attention should be given to the caregivers of ADRD patients. This study revealed that the family caregivers of patients with ADRD who exhibit BPSD experience substantially negative emotions, poor caregiving experiences, heavy caregiving burdens, and tendencies towards psychological avoidance. The participants expressed existence, relatedness, and growth needs, while also expressing a desire for professional assistance and policy support. Furthermore, caregivers from different cultural backgrounds may have varying caregiving needs. In the future, attention should be given not only to caregivers’ physical and mental well-being but also to their social connections to prevent adverse consequences resulting from social detachment.

Implications for future research

The currently available Practice Guidelines on the Use of Antipsychotics to Treat Agitation or Psychosis in Patients with Dementia 67 are intended for general and specialist clinicians to inform the provision of care. They are not intended as a strategy for the day-to-day care of caregivers. Hence, there is a need to develop caregiving strategies specifically tailored to help family caregivers address BPSD. Given the varying needs of family caregivers, researchers should thoroughly understand the specific requirements of each caregiver when formulating caregiving strategies for patients with ADRD. Researchers also should collaborate with various stakeholders (hospitals, communities, and families) as much as possible to provide caregivers with precise and personalized caregiving strategies to address BPSD effectively.

In the future, healthcare professionals should also prioritize the needs of family caregivers when providing care services to individuals with ADRD. Social organizations should offer appropriate support when necessary, such as by establishing volunteer groups to assist the families of patients with ADRD. Policymakers should enhance their focus on the needs of family caregivers of patients with ADRD, including streamlined reimbursement processes, relaxed reimbursement criteria, and the establishment of more nursing homes tailored to the characteristics of patients with ADRD. These measures are crucial for improving the physical and mental well-being of caregivers and further aiding in the development of service models and supportive caregiving strategies for patients with ADRD.

AUTHOR CONTRIBUTIONS

Xiaohong Zhang (Conceptualization; Data curation; Formal analysis; Methodology; Software; Writing – original draft); Mingzhen Wang (Data curation; Formal analysis; Resources); Kaiyue Chen (Data curation; Formal analysis); Na Shi (Data curation; Resources); Xia Cui (Formal analysis; Resources); Zhicheng Yang (Formal analysis; Software); Feifei Chen (Conceptualization; Methodology; Supervision; Writing – review & editing); Xingfeng Lin (Conceptualization; Funding acquisition; Resources; Supervision; Validation; Writing – review & editing).

Footnotes

ACKNOWLEDGMENTS

The authors would like to express their sincere gratitude to all the medical staff of the Second Hospital of Shandong University and the Shandong Mental Health Center for their support and assistance in clinically recruiting the study participants, and to all the interviewees who contributed to this study.

FUNDING

This study was supported by the Jinan Science and Technology Program (201913006) and the Second Hospital of Shandong University (No. 2022YP60). The funder had no role in the study design, data collection and analysis, publication decision, or manuscript writing.

CONFLICT OF INTEREST

The authors have no conflicts of interest to report.

DATA AVAILABILITY

The data supporting the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

The supplementary material is available in the electronic version of this article: .

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Understanding Family Caregivers’ Needs in Coping with the Behavioral and Psychological Symptoms of People with Dementia: A Hermeneutic–Phenomenological Study