Shifting of Centricity: Qualitative Meta Synthetic Approach on Caring Experience of Family Members of Patients with Dementia

Young Mi Ryu; Mi Yu; Seieun Oh; Haeyoung Lee; Haejin Kim

doi:10.4040/jkan.2018.48.5.601

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Ryu, Yu, Oh, Lee, and Kim: Shifting of Centricity: Qualitative Meta Synthetic Approach on Caring Experience of Family Members of Patients with Dementia

Original Article

J Korean Acad Nurs 2018;48(5):601-621.

Published online: 15 January 2018

DOI: https://doi.org/10.4040/jkan.2018.48.5.601

Shifting of Centricity: Qualitative Meta Synthetic Approach on Caring Experience of Family Members of Patients with Dementia

Young Mi Ryu¹, Mi Yu², Seieun Oh³, Haeyoung Lee⁴, Haejin Kim^5,

¹Department of Nursing, Baekseok University, Cheonan

²College of Nursing · Institute of Health Sciences, Gyeongsang National University, Jinju

³College of Nursing, Dankook University, Cheonan

⁴Department of Nursing, Hoseo University, Asan

⁵Department of Nursing, Suwon Women's University, Suwon, Korea

Address reprint requests to : Kim, Haejin Department of Nursing, Suwon Women's University, 72 Onjeong-ro, Gwonseon-gu, Suwon 16632, Korea Tel: +82-31-290-8232 Fax: +82-31-290-8208 E-mail: kimhj@swc.ac.kr

Received 23 May 2018 Revised 2 August 2018 Accepted 18 September 2018

This is an Open Access article distributed under the terms of the Creative Commons Attribution NoDerivs License. (http://creativecommons.org/licenses/by-nd/4.0) If the original work is properly cited and retained without any modification or reproduction, it can be used and re-distributed in any format and medium.

Abstract

Purpose

This study aimed to synthesize the caring experiences of Korean family members of patients with dementia through a qualitative meta-synthesis method.

Methods

By searching through nine Korean and English databases, we compared 37 qualitative studies on caring experiences of family members of patients with dementia. The selected studies were synthesized through meta-synthesis, proposed by Sandelowski and Barroso (2007).

Results

The meta-synthesis elicited four themes: tough life due to care for patients, changes in relationships, adaptation to caregiver's roles, and new perspectives of life through personal growth. Caregivers were shocked when a sudden diagnosis of dementia was made prior to any preparation on their part. They were tied to their patients all the time and their mind and body got exhausted. Their relationship with patients began to change and they looked at them differently. They experienced conflicts with the other non-caring family members and were alienated from them. They were also socially isolated. However, by building their own care strategies and utilizing social resources, they gradually adapted to their caregiver roles. Finally, they experienced personal growth and acquired a new perspective toward life by accepting their roles and finding meaning in their lives. Shifting the caregiver's centricity from themselves to the patient was the process of becoming human beings who actively constructed their realities while giving meaning to their painful lives and interacting with the environment.

Conclusion

The results of the study can be useful for nurses in understanding the experiences of caregivers of the patients with dementia and in providing them with practical interventions.

Keywords: Dementia, Family Caregiver, Caring, Qualitative Research

References

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Figure 1.

Flowchart of the search process.

Figure 2.

Shifting of centricity: Caring experience of family members of patients with dementia.

Table 1.

Summary of the Studies Reviewed

No	No. Author (Year)	Purpose	Methodology	Participants	Data collection method	Results
1	Baek (2008)	) To identify common	Constant	Husband 7, wife	Qualitative	Comprehension of early-onset dementia, Symptoms
		needs of family	comparison	1, son 1, sister	interview	and characteristics of the patient, Responsibility
		members of presenile	methods	1		of caregiving the patient with ambivalence,
		dementia patients				Willingness to use social services
2	Chang	To investigate the	Not mentioned	Husband 1,	In-depth	Cause for prevalence of dementia, Symptom of
	(2001)	characteristics of the		wife 1, son 1,	interview	aimless wandering, Relationship between family
		elderly with dementia		daughter 1,		members of patients, Positive aspect of family
		and the services their		daughter-in-		members
		caregivers want		law 1
3	Chee &	To understandings	Thematic	Daughter-in-law	In-depth	1. Perceptions of dementing illness.
	Levkoff	of perceptions of	approach	8, daughter 2	Interview	2. Cultural in uences on caregiving: Parental
	(2001)	dementia among				caregiving vs seeking outside care,
		Korean family				Changing attitudes witnessed: emerging re-
		caregivers and				institutionalization of filial responsibility
		cultural influence				3. Development and utilization of formal services for
		on the practice of				the elderly and family caregivers
		care, and utilization
		of formal services
		for elderly persons
		with dementia and
		caregivers
4	Cheon &	To understand	Content analysis	Husband 1, wife	Focus group	1. Characteristics of wandering behaviors
	Song	the wandering		7, daughter 2	interview,	2. Strategies for wandering management
	(2015)	management			individual
		experience of family			interview
		caregiver of demented
		elderly
5	Cho (2016)	To understand the	Inductive case	Daughter-in-law	In-depth	1. Pre-care stage: living together with demented
		experience of	study analysis	5	interview	elderly with neither preparation nor notice
		daughters-in-law who				2. Initial care stage: The duty and responsibility of
		take care of parent-				the daughter-in-law, sacrifice, enduring through
		in-law with cognitive				faith
		disorders				3. Mid-care stage: neglect by parents-in-law, lack of
						interest from husband and inlaws, regrets about
						insufficient parenting, misperception, awareness
						about others' judgement, lack of social service,
						gradual exhaustion, holding one's temper back,
						endless care, deteriorating financial status
						4. Late care stage: being a role model to one's
						children, taking better care of demented elderly
						with sadness, regrets due to providing poor care,
						self-criticism of the provided care 5. After care stage: maturing through faith and
						service, finding meaning of one's life, actively
						preparing for the caregiver's own future
						6. The flow of emotion: denial, submission, conflict,
						consciousness, growth
6	Chung	To understand the	Phenomenology	Husband 4, wife	In-depth	Sudden diagnosis of dementia, Gradual hardships
	(2007)	experience of spouses		1	interview	in caring for one's demented spouse, Burden of
		who take care of				providing continuous care, Assistance from close
		spouse with dementia				acquaintances, Disease does not affect love,
						Feeling pity for the demented spouse, but stress
						for oneself, Usefulness of social services, Hoping
						for a cure, but regretting the lost time
7	Han (2013)	To reveal deeply	Narrative inquiry	Daughter 1,	In-depth	1. Feeling guilty when they did not take care of
		guilt experience of		wife 1, son 1,	interview	their patient at home, when they thought their
		Christian dementia		daughter-in-		care was subpar, and when they were not good
		family		law 1		enough before God
						2. Justifying oneself to overcome guilt, but asking
						for God's redemption afterwards
						3. Recognizing their own sinful character, coming
						forward to God, and having a chance to perceive
						their own mission
8	Jang (2014)	To understand and	Phenomenology	Husband 4, wife	In-depth	Body moving like old machines, Swamp of despair
		describe the caring		8	interview	filled with hope, Time of sweetness after
		experiences of spouse				bitterness, Elderly couple in an empty nest, Lack of
		of elderly people with				understanding vs. empathetic feelings
		dementia
9	Jeong	To understand the	Phenomenology	Wife 9	Interview	Dark clouds all of a sudden, Heavy burden like
	(2010)	experience of the				lashing rain, Trying to keep out pouring rain
		wives who care				without an umbrella prepared, Desire to shelter
		for their husbands				oneself against the rain, Conflict and pain amidst
		suffering from				the thunderstorm, Staring at the sun shining
		presenile dementia				through clouds after rain stops
10	Kim (2015)	To explore the essence	Narrative inquiry	Wife 1, son 2	In-depth	After becoming caregivers, the participants' mental
		of the family		daughter-	interview	and physical health has deteriorated, gradually this
		experience with		in-law 1,		lead to stress and depression
		demented elderly		daughter 1,
11	Kim (2002)	To explore coping	Content analysis	Daughter-in-	In-depth	Family members' 11 coping strategies: seeking help,
		strategies when family		law 8, wife 5,	Interview	ventilating emotions, converting mood, relying
		members who take		daughter 3,		on religion, treating the patient with affection,
		care of the elderly		sister/brother 1		mediating caring role, managing problematic
		with dementia at				behavior, redefining circumstances, wishing,
		home face difficulties				projecting, emptying the mind
		in caregiving
12	Kim (2005)	To understand	Grounded	Daughter-in-	In-depth	The coping process of family caregivers while taking
		caregivers’ difficulties	theory	law 8, wife 5,	interview	care of the demented elderly (6 stages): problem
		in coping strategies		daughter 3,		recognition, undertaking care, struggling, mental
				sister 1		control, burden mediation, acceptance
13	Kim & Um	To find out the	Content analysis	Daughter-in-law	Focus group	1. It is necessary to prepare expansion of house
	(2015)	difficulties that		1, husband 1,	interview	work support, daily life service support and
		dementia families		daughter 4		effectiveness education related with cognition
		feel when caring for				improvement program for the families of the
		elderly with dementia				elderly with dementia
		after establishment of				2. It is necessary to provide family therapy in order
		the special dementia				to release psychological pains of the families of
		rating system				the elderly with dementia
						3. It is necessary to have responsible professionals
						to arrange the necessity of customized care
						institution fit for dementia rating, to care for the
						elderly with dementia at night and on weekends.
						24 hour care support and education/information
						sources are required for families of the elderly
						with dementia
14	Kim (2016)	To understand the	Phenomenology	Daughter 4,	Interview	Parents came on behalf of family vacancies.
		experience of		daughter-in-		Parents were diagnosed with dementia without
		menopausal women		law 6		compensation for aging. Caregivers were too old
		who care for parents				to care for parents with dementia. Caregivers
		with dementia				were isolated from family due to demented
						parents. Caregivers did not want to pass down
						their responsibility in caring for demented parents
						to their children. Caregivers planned a different
						life compared to their parents
15	Kim (2013)	To find out care	Thematic	Daughter-in-law	In-depth	More emotional stress than physical stress,
		motivation, stress of	analysis	10, daughter 2	interview	Ambivalence felt by main supporters, Request
		daughter-in-law and				for social service. Difference in the degree that
		daughter				daughter-in-law taking care of demented elderly
						and son accepted the disease of dementia
16	Kim KB &	To understand the	Ethnography	Husband 3, wife	In-depth	Psychological conflict, Physical, social and
	Lee KH	experiences of		2, daughter 2,	interview	psychological pressure, Isolation, Acceptance,
	(1998)	caregivers and to		daughter-in-		Love, Hope
		develop the nursing		law 4, son-in-
		theory related to		law 1
		caregivers
17	Kim (2001)	To find out how stressed	Constant	Daughter-in-law	In-depth	1. Behavioral coping strategies: direct behavior to
		family members	comparison	11, daughter	interview	deal with environment, and look for information
		who take care of	methods	2, wife 2,		2. Emotional coping strategies: effort to deal
		demented elderly are		husband 1		with denial belief and avoidance response to
		and how they cope				circumstances
		with patients with				3. Coping strategies for social support: religious
		dementia				support, seeking help from one's extended family
18	Kim (2010)	To understand the	Phenomenology	Wife 4, husband	d In-depth	Abrupt appearance of dementia, Unstable life due
		experiences of		2	interview	to dementia, Adaptation or coexistence with
		spouses who are				dementia for the caregiver, Life as a caregiver of
		helping the spouse				one's demented spouse, Still having hope
		with dementia and
		the meaning of their
		experiences
19	Kim SY &	To understand the	Phenomenology	Daughter-in-	In-depth	1. The cause of the dementia to ‘environmental
	Lee SH	caregiving experiences		law 4, son 1,	Interview	change’ and the introverted personality of the
	(1998)	of family members		husband 1		elderly
		with demented				2. Family caregivers left the demented elderly alone
		patients and to help				initially and then they recognized the symptoms
		developing a family				of dementia
		education program				3. Coping responsess: having their moods fluctuate,
		for them				enduring and praying, avoiding the elderly,
						hoping for release from responsibility, enduring
						their conditions, accepting the elderly, taking an
						objective view and taking safety measures
						4. The long ordeal of coping with a demented
						elderly person resulted in the loss of physical and
						psychological well-being, ethical conflicts, family
						conflicts, becoming desperate, rejection of the
						aging process, sympathy and understanding for
						the elderly, awareness that the support system is
						important and hope of sharing their responsibility
20	Kim & Jun	To understand	Not mentioned	Daughter 1, son	In-depth	1. Understanding dementia and recognizing its
	(1995)	experience of family		1, daughter-in-	interview	symptoms
		members with		law 6		2. Coping strategies and management of dementia
		dementia and to				3. Changes in relationships and ambivalent feelings
		identify their needs				about caregiving within family
		and difficulties				4. Burden in caregiving and results afterwards
						5. Isolation and needs of a family with a demented
						patient
21	Kim (2007)	To understand the	Phenomenology	Husband 1, wife	In-depth	1. Understanding about elderly patients with
		meaning and essence		3, daughter	interview	dementia by accepting dementia as a disease,
		of the experience of		2, daughter-		Self-definition & self-appraisal of caregiving
		main family caregivers		in-law 3,		2. Contemplating existential thoughts, Polarity of
		who care for the		granddaughter		ambivalent feelings
		demented elderly		1		3. Questioning of the transgenerational continuity
						of filial piety, and Different experiences with the
						formal care system
22	Lee (2006)	To understand	Phenomenology	Husband 5	In-depth	1. Late discovery due to ignorance of dementia
		husband's caregiving			interview	2. Repentance at the negligence of their wives
		experience and				3. Transition of their role from a husband to a
		adaptation process to				caregiver
		care for a demented				4. Experiencing both physical and mental crises
		wife				because of troublesome behaviors
						5. Recovering the suffering through various
						resources
						6. Adapting oneself to caregiving
						7. Change and growth vs. the remaining crisis
23	Lee, Kim, &	To understand the	Phenomenology	Husband 6	In-depth	1. Difficulty in recognizing their wife's disease
	Ku (2007)	caring experience of			interview	2. Agony of caregiving as a husband and parent
		husbands who provide				3. Economic struggles and desire to work
		care to their wife with				4. Adaptation through self-change and social
		presenile dementia				supporting organizations
						5. Need for rational and specialized services
24	Lee & Park	To identify changes	Not mentioned	Daughter-in-	In-depth	Source of social support, Consciousness of
	(2007)	on social support,		law 3, wife 3,	interview	caregiving, Family relationship
		thought on		daughter 4
		the caregiving,
		relationship with
		other family members
		after utilizing day care
		facility
25	Lee & Ha	To understand the	Phenomenology	20 Family	In-depth	Burden of coping with the patient's actions,
	(2008)	experience of		members with	interviews	Environmental difficulty related to the patient,
		dementia patient’s		defecation care		Self-dilemma, Burden of weakness of general
		experience of		of dementia		health, Effort of resolution in one's way
		defecation care		patients
26	Lee (1996)	To understand the	Phenomenology	Daughter-in-law	In-depth	Isolation, Burden, Guilt, Fatigue, Adjustment,
		essence of caring		1, wife 1	interview	Spirituality, Maturation, Seeking information
		experience of family
		members of dementia
		patients
27	Nam (2001)	) To understand the	Template	Daughter-	In-depth	1. The caregiver was indifferent and uninterested
		stressors and coping	analysis	in-law 7,	interview	about dementia, had an incorrect and subjective
		strategies of family	methods	granddaughter		knowledge of dementia, and failed to recognize
		members who care		1, daughter 3,		the symptoms in time
		involved in caring for		wife 1		2. Coping strategies include emptying one's mind,
		demented elderly				improving the environment, active response, and
						tailored actions
						3. Coping strategies for caregiving conflicts across
						the family include avoiding family members who
						do not cooperate, hoping that the demented
						elderly will pass away, and blaming one's
						situation and the demented patient
28	Oh & Kwon	An in-depth	Phenomenology	Granddaughter	Semi-	1. Some behaviors that the caregiver(s) find
	(1999)	understanding of the		1, daughter-in-	structured	difficulty in caring are: issues with communication
		burnout process of		law 1	interview	due to decreased hearing ability, health issues of
		family caregivers who				the demented patient due to abnormal dining
		care for patients with				habits, aggressive language, wandering, lack
		dementia				of circadian rhythm, affective disturbance, fear
						of being alone, and hardships in bathing and
						changing clothes
						2. The article encompasses the reactions and coping
						strategies of the demented patient's caregiver(s)
						against these difficulties
						3. Although the caregiver(s) seemed to undergo
						severe psychological distress, they expressed their
						filial duty of taking care of the demented patient
						as far as the patient is alive
29	Park (2007)	To understand caring	Phenomenology	Daughter-in-law	In-depth	Beginning a life without me, Adding more rocks
		experience of		4	interview	to the burden on one’s back, Attempts and
		daughters-in-law who				management to unload the burden, Escape
		provide care to their				from caretaking via external dementia care on
		parent-in-law				weekends
30	Park (2013)	To understand the	Grounded	Husband 7	In-depth	- ‘Slowly accepting wife's dementia’
		experience of	theory		interview	1. Recognizing changes (experiencing sudden
		husbands who provide				change due to neglect of dementia)
		care to their wife with				2. Denial (doctor shopping, failing to accept reality,
		presenile dementia				seeking an alternate cure)
						3. Striving (adjusting to reality, taking her roles of
						mother and housewife, bearing the situation)
						4. Acceptance (finding hope, finding the meaning
						of life in caregiving, burn-out, sympathy)
31	Seo (2003)	To understand	Narrative inquiry	Daughter-in-law	Interview,	Life without her own life, The lonely burdened life,
		the experience		3	observation	burdened life, The desire to break herself from
		and meaning of				her husband’s family members, Unwillingly doing
		daughters-in-law who				her duty, Expecting some compensation from her
		care for mothers-in-				husband, A sense of pride in doing her duties,
		law with dementia				Feeling exhausted
32	Song	To examine in detail the	Categorical	Wife 5, son 1,	In-depth	Development of dementia, The difficulty of caring,
	(2016)	caring experiences of	aggregation	daughter-	interview	The form of support from family, Approaching the
		primary caregiver of		in-law 1,		day and night care services, Changes made after
		elderly households		granddaughter	r	using the day and night care services, Satisfaction
		with adult children		1		factors of the day and night care services,
		and elderly couple				Additional desire regarding the day and night care
		households				services, Views on using care facilities, Perception
						on the government's policy to manage dementia
33	Song, Lee,	To understand the	Content	Daughter-in-law	Focus group	1. Temporary break from routine
	& Cheon	meaning of rest for	analysis	2, wife 3, sister	r interview	2. Direct help: taking care of oneself, receiving
	(2010)	a family that cares		1, daughter 2		economic help
		for the elderly with				3. Psychological comfort: empathizing with others,
		dementia				comfort based on trust, resting together with the
						demented patient
						4. Valuables which cannot be obtained easily
34	Sung, Yi,	To understand how a	Content	Daughter	31 essays	1. The confronting stage: severe negative feelings
	Lee, & Jan	family caring for the	analysis	13, wife 9,	written	and exhaustion occurring after the patient’s
	(2013)	elderly with dementia		daughter-in-	by family	diagnosis of dementia
		overcome the		law 7, son 1,	caregivers	2. The challenging stage: major driving forces in
		difficulties in caring		sister 1	who adapt	taking good care of their patients. It includes
					well	tender loving memories about the patients as
						well as family and social supports
						3. The integrating stage: genuine empathy for the
						patients’ situation and the happiness of ‘here and
						now’
						4. Transcendental stage: new hope in the future
35	Woo (1997)	To examine the	Constant	9 (Husband,	In-depth	1. The caregiver's relation to the patient before
		subjective meanings	comparison	wife, daughter,	Interview	diagnosis of dementia affected the quality of the
		of experience of	methods	daughter-in-		current relationship and the patient's abnormal
		main caregiver in the		law, son)		behavior
		family in relation with				2. There is a conflict between the primary caregiver
		demented elderly				and secondary caregiver
		and secondary family				3. The degree of responsibility varies depending on
		caregivers				who the caregiver is. Spouses tended to assume
						full responsibility while children tended to expect
						the entire family to participate in caretaking
						4. While there are secondary caregivers, they were
						of little help to the primary caregiver
						5. Family conflicts lead to negative social support for
						the primary caregiver
36	Yang & Han	To explore the	Phenomenology	Wife 2	In-depth	Heavy role, Limitation of social activities, Efforts to
	(2015)	experience of			interview	adaptation
		caregivers of dementia
		patients
37	Yi, Kim, & Yi	To find out what the i	Thematic	Daughter-in-	Secondary	Androcentric view of family caregiving, Undervalued
	(2004)	caring experience as a	content	law 7, wife 2,	data	family caregiving by the family members, Self-
		female caregiver is like	analysis	granddaughter		rationalization in the context of family caregiving,
				1		Family-centric care mechanism, Exemplary
						caring within the family context, Inter-familial
						relationships among women

Table 2.

Synthesized Themes of Caring Experience of Demented Patient's Family Caregiver

Core themes	Themes	Sub-themes	Studies
Shifting of	Tough life due to	Sudden diagnosis of dementia	A1, A5, A6, A7, A8, A9, A10, A12, A13, A14, A16, A17, A18, A20,
centricity	caring for patients	without any preparation	A22, A23, A30, A31, A32, A34, A36
		Exhausted mind and body by	A3, A6, A8, A9, A10, A14, A15, A16, A18, A19, A22, A25, A26, A29,
		being tied to the patient all	A31, A32, A34, A36
		the time
	Changes in	Changes of the way to look	A1, A2, A3, A5, A6, A7, A8, A9, A11, A12, A13, A15, A18, A20, A21,
	relationships	at the patient	A22, A24, A25, A26, A28, A29, A31, A32, A34, A35, A37
	regarding care	Conflicts and alienation	A2, A5, A6, A7, A8, A9, A10, A11, A12, A13, A14, A15, A16, A17,
		caused by caregiver role	A18, A19, A20, A21, A22, A24, A25, A27, A29, A31, A32, A34,
			A35, A37
		Social isolation	A3, A4, A5, A8, A9, A10, A15, A16, A18, A20, A22, A23, A26, A29,
			A30, A34, A36
	Adaptation to	Building own care strategies	A2, A4, A5, A7, A8, A9, A11, A12, A16, A17, A19, A20, A21, A22,
	caregiver roles		A23, A24, A25, A26, A27, A28, A29, A30, A31, A33, A34, A36
		Utilizing social support	A1, A2, A3, A5, A6, A7, A8, A12, A13, A15, A17, A18, A21, A22,
			A23, A24, A26, A29, A30, A31, A32, A33, A34, A35, A36
	New perspectives	Personal growth by accepting	A5, A6, A7, A8, A9, A11, A15, A18, A19, A20, A21, A22, A23, A26,
	of life through	the situation	A30, A32, A33, A34
	personal growth	Expanded perspectives of life	A5, A7, A14, A16, A30, A34
		through caregiving

A=Appendix.

Table 3.

Illustration of Data Analysis

Findings and interpretation from individual qualitative studies		Synthesized subthemes	Synthesized themes
Chee & Levkoff (2001)	Caregivers experience many burdens including fatigue, lack of free time and	Exhausted	Tough life due
	sleep, anxiety about their own health, and psychological instability	mind	to caring for
Chung (2007)	Gradual hardships in caring for one's demented spouse; burden of providing	and body	patients
	continuous care	by being
Jang (2014)	Body moving like old machines (Tired body moving continuously without rest,	tied
	trained body from day-to-day caring); jail without bars (Battle without any	to the
	winners or losers)	patient
Jeong (2010)	Heavy burden like lashing rain (Caregivers were not able to leave the patient	all the
	alone due to their problematic behaviors and dependency); staring at myself	time
	wet from the rain, feeling sad, and having self-doubt (Pains and sadness
	due to endless confrontation with the patient, feeling sorrow because of the
	inescapable burden)
Kim (2015)	After becoming caregivers, the participants' mental and physical health has
	deteriorated. Gradually, this lead to significant distress and depression.
Kim (2005)	Stage of undertaking care (Families with dementia patients usually determine a
	designated caregiver. The caregivers are rarely to be prepared to take part in
	the caregiving, which thereby led plenty of practical difficulties and experienced
	lots of trial and errors.); stage of struggling (Since the intensity and frequency
	of the patient’s problematic behaviors increase over time, the caregiver and
	the family have serious role conflict, which can be metaphorically expressed
	as ‘desperate fight with the disease and hardships.’); stage of mental control
	(Significant deterioration in the patient’s cognitive and physical functioning
	induced unspeakable distress and negative responses including powerlessness,
	profound despair, frustration and resentment.)
Kim (2016)	Caregivers were too old to care for parents with dementia. (Caregivers
	experience sleep deficit, chronic fatigue, and bodyache. They were not able to
	have their own life and respite due to caregiving.)
Kim (2013)	Caregivers experience financial, psychological/emotional, and physical distress
	due to the following: patient’s problematic behaviors, cognitive and physical
	functioning deterioration, the in-law families’ indifference, misunderstanding of
	the disease and care, and emotional disturbances such as depression
Kim KB & Lee KH (1998)	Caregivers were suffering from psychological conflict; physical, social and
	psychological pressure; and self-consciousness related to the stigma against
	dementia.
Kim (2010)	Difficult journey of caring for demented patients and psychological turmoil;
	experiencing decline of own health
Kim SY & Lee SH (1998)	Having their moods fluctuate; enduring and praying; hoping for release from
	responsibility, enduring their conditions
Lee (2006)	Experiencing both physical and mental crises because of troublesome behaviors
Lee & Ha (2008)	Burden of coping with the patient's actions and weakness of general health
Park (2007)	Beginning a life without me; adding more rocks to the burden on one’s back
Seo (2003)	Life without her own life; the lonely, burdened life; unwillingly doing her duty;
	feeling exhausted
Sung, Yi, Lee, & Jang (2013) Severe negative feelings and exhaustion occurring after the patient’s diagnosis of
	dementia
Chee & Levkoff (2001)	One of the most difficult aspects is that I can no longer have free time for myself	Social	Changes in
Cheon & Song (2015)	Tied to the patient all day long	isolation	relationships
Cho (2016)	Ostracized from friends and social life		regarding care
Jang (2014)	Decreased communication with friends after they learned about the caregiver's
	spouse having dementia, and worsening relationships
Jeong (2010)	Feeling of social isolation, inconvenience due to limited radius of activity
Kim (2015)	Avoiding social interactions
Kim (2013)	Lack of social life and time for hobbies
Kim (2010)	Disconnected from society
Kim & Jun (1995)	Difficulties arising from lack of free time
Lee (2006)	Unable to interact socially for a prolonged time, breaking old relationships,
	loneliness and social isolation
Lee, Kim, & Ku (2007)	Withdrawal from social relationships and feeling trapped
Lee (1996)	Difficulty in not only going out but also participating in social life
Park (2007)	Becoming distant from the outside world
Park (2013)	No one to regard as a confidante, infrequent social interactions, avoiding
	meeting with friends
Sung, Yi, Lee, & Jan (2013)	) A lack of opportunity to interact with society lead to depression and isolated life
Yang & Han (2015)	Not participating in meetings due to caregiving, lack of activity due to time
	restraints

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