Originals

Asian Pacific Journal of Disease Management 2020; 9(1·2), 00-00
Copyright© 2013 JSHSS. All rights reserved.

A life ability and care experience of the care family of thedementia elderly person who lives at home
Hiromi Kimura, Midori Nishio, Hiroko Kukihara, Kayoko Koga, Yuriko Inou
Fukuoka University of Medicine
Abstract
The authors clarified quality of life from life ability and care experience of families that had dementia elderly.
We discussed on supporting methods for improving their quality of life. We applied simplified family life
ability assessment scale, and performed semi-structural interview for their care experience based on the interview guide for the ten families taking care of their at-home dementia elderly. As a result, four categories,
which are [Influence on mental health with the care], [Family’s lack of care support], [Sense of separatenessof the caregiver holds], [Sense of separateness of the caregiver holds] and [Support of the care staff and appearances] have been extracted from the “star type” families. From the “box type” family, [Physical fatigue
and mental fatigue with the care], [Uneasiness of the future of the care], [Heavy responsibility for the care of
the caregiver], [Care role of the family] and [Care giver’s shake of social support utilization] have been extracted. From the “full-moon type” family, [Family life with the dementia elderly person], [Good relation
between the person with dementia elderly person and the family members], [Mutual support between thefamily] and [Family understands social support utilization] have been extracted. 13 categories were extracted.
The result suggested that for the care experience according to the life ability pattern of the family who cares
at home for a dementia elderly person, It is lacking in the physical health problem of the care family and thecare support of the family, and when role allotment is not carried out smoothly the care support system was
not set, and a care family felt uneasiness of the future, and the isolated thing that I knew was suggested.
Key words: dementia elderly, family caregiver, life ability, care experienceI Introduction
It is estimated that the number of dementia patientsin Japan exceeded 5 million patients in 2015 and willreach 7 million patients by 20251). In the community-based integrated care system, it aims to proceed anefficient/prioritized benefits2), and accomplish the goalin the new orange plan describing as “The plan supports the realization of a society where persons withdementia are able to live in a pleasant and familiar local
environment as long as possible while their opinions
being respected”1). Nursing care may cause a lifestylechange due to an influence on job, housework, social
activity, and leisure time3). These changes would possibly harm a family health4). The preceding studies reported many cases for family nursing care burden, fam
Received: February 2, 2018
Accepted: May 22, 2018
Address: 8-19-1 Nanakuma, Jonan-ku Fukuoka 814-0180,
JAPAN
Phone: +81-92-871-6631

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ily function5), and a livelihood support of family
caregiver6~10). Takami11) mentioned that family caregivers for dementia patients may suffer a never-ending 24hour nursing care as physical/metal fatigue or the chaosof family life while Yasuda12) described a full usage ofsocial resources and change in awareness for the solutions.
In recent years, a family structure has largely beenchanged due to nuclear family, women’s social advancement, and increased divorce rate. It was also
pointed out that a way of home care was changed witha decreased family nursing ability13). Some researches
were conducted for nursing care and family function14),family system15), and assessment for ability of family
caregiver16). Shimauchi et al.17) defines a family living
capacity as “A necessary integration of knowledge,
skill, attitude, interpersonal relationship, behavior, andemotion for family healthy life”. Some researches werealso reported for a family living capacity model such asa hospital discharge support with use of the model18)
and a study on support for male caregiver19). However,2020/04/21

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Asian Pacific Journal of Disease Management 2020; 9(1·2), 00-00

there was no report for examining family living capacity and nursing care condition by targeting nursing family with dementia elderly at home. The study aims toclarify family living capacity and nursing care experience for dementia elderly (care receiver).

more acute angles with aggravated health problem.
Lastly, “Fist type” represents a small shrunken circularshape with a lower achievement rate3)21).
Nursing care experience includes “How a person
considers a first symptom and deals with it”, “How other family members consider the symptom”, “How a cooperation with other family members and their roles arechanged”, and “What is a current problem” as the interview guidance. We conducted the interview at a designated place requested by a research subject along withhis/her consent after having an appointment in advanceand explaining the interview time as approximately 60
minutes.

Definition of term
Family living capacity in the study means a necessary integration of knowledge, skill, attitude, interpersonal relationship, behavior, and emotion for family
healthy life17). A nursing care experience will be an experience when providing nursing care to a care receiver3).

II Study method
1. Selection of research subject
As selecting 10 primary caregivers for care receivers living at home, the study was referred to responsible
persons working at 5 home-visit nursing stations in Prefecture S.
2. Research contents and data collection
The research was conducted by a questionnaire
survey with interview for basic attributes and a simplified assessment scale of family living capacity (familyliving capacity)20). Basic attributes, degree of independence in daily life, and nursing care level for care receiver (dementia elderly) were transferred from the
medical record. A semi-structured interview was conducted for nursing care experience on the basis of theinterview guidance.
Family living capacity consists of questions from 9
areas 60 items such as health maintenance ability, coping ability for health problem, nursing care ability, utilization ability for social resources, housework ability,role reallocation/complementary ability, relation adjustment/integrating ability, adjustment ability for living environment, management ability for economy/household budget. Achievement rate (%) will be calculated for appropriate scores on the basis of “Quick chartby achievement rate” after adding up scores by eacharea. It can be categorized into 4 patters (Full-moon
type, Box type, Star type, and Fist type) after plotting
the fulfillment rates on a radar chart as a form of diagram. “Full moon type” represents an approximately-circular shape with a stable nursing care and a highachievement rate. “Box type” represents two or moreparalleled sides as connecting two or more areas withoverlapped health problems. “Star type” represents 3 or

3. Analysis method
The study graphically categorized family living capacity with 4 patterns (Full-moon type, Box type, Star
type, and Fist type). The interview data was qualitatively analyzed by the 4 patterns. The study extracted andcoded the phenomena describing as nursing care experience according to the literal record. We also summarized codes in subcategory by confirming the meaningof data context. Furthermore, the subcategory’s common abstraction levels were arranged and named as categorization. In the main text, the study indicated【 】ascategory, < > as subcategory, “ ” as data, and ( ) as description. Then, it compared the characteristics of nursing care experience by a family living capacity pattern.
In addition, the analysis contents secured face validity
with the examination by 4 specialists from the family
nursing area.
4. Ethical consideration
We provided oral and written explanation for the
study purpose/contents to the research subjects, and astudy participation or cooperation was totally decided
on a voluntary basis without any advantage/disadvantage by the decision. We carefully handled the personal
data to avoid any information leakage by data anonymization and no data usage other than the research.
The present study was carried out with an approval
from the S University Ethics Review Committee.

III Result
1. Summary of the research subjects and carereceivers
The research subjects were 10 persons at the age of
48-86. The care receivers were 1 male and 9 females at

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A life ability and care experience of the care family of the dementia elderly person who lives at homea caregiver>. In addition, one person takes responsibility for both nursing care and housework because of lackof understanding by other family members such as “I
can not ask for nursing care to other family members
due to lack of knowledge for nursing care” and “Nursing care is my duty”.【Support by nursing care staff andpublic decency】consisted of <Nursing care staff aresympathizers for nursing care> and <I am worried
about public decency when utilizing social resources>.
Nursing care staff plays an important role as an adviser
giving encouragement and concerned expression for
caregiver”. On the other hand, caregivers complain that“it is difficult for caregivers to consult with other family
members to use social resources as additional care services”.

the age of 81-95 (Table 1).
2. Category and achievement rate for a familyliving capacity patternFigure 1 shows Average achievement rate of familyliving capacity in 9 areas by a family living capacity
pattern. “Fist type” was not recognized in the Figure.
Table 2 shows the achievement rate of family living capacity by the research subject.
3. Nursing care experience by a family living
capacity pattern (Table 3)
1) Nursing care experience of “Star type” family【Influence on mental health by nursing care】consisted of <I feel pain in dealing with dementia> <Thereis no time for myself because of nursing care>. There
were also descriptions as “I have a palpitation becauseof stress caused by care receiver’s behaviors” and “Because a care receiver looks for me all the time, I do nothave time even for hobby and shopping”.【Lack ofnursing care support by family members】consisted of<Family members do not understand my symptom>
and <Family members do not understand the necessityof nursing care cooperation>. There was a situation ofabsence of secondary caregiver such as “Nobody sympathizes with me because of no knowledge of dementia” and “People visit me but I can not find a person
whom I can ask for nursing care”.【A sense of isolation
by caregiver】consisted of <I can not find anyone to
replace me for nursing care> and <I feel responsible as
Table 1.

2) Nursing experience for the family of “Boxtype”
【Physical and mental exhaustion by nursing care】
consisted of <I can not be involved with any social activity due to nursing care> and <No family member understands the hardship of nursing care for dementia>.
The research subjects faced a difficult social life as “I
can not get out of the house” and “I am late for work”.
Then, they started thinking “I am the only one who extremely suffers in such situations” (where other family
members were suspicious about the symptom as “Is it
really dementia?”)【Future concern for nursing care】
consisted of <I am concerned about the requirement of
more nursing care in future> and <I have a difficulty toSummary of research subjects
Summary of primary caregiver

Summary of care receiver

Research
subjects

Sex

Age

Relation

Occupation
statusSex

Age

Category ofcare need

Degree of independence in daily life
for dementia elderly

A

Female48

Son’s spouseNo

Female89

Level 1ⅡaB

Female62

Son’s spouseNo

Female91

Level 2ⅡaC

Female

75

Wife

Yes

Male

81

Level 2

ⅢaD

Female52

DaughterYes

Female82

Level 1Ⅱb

E

Female61

DaughterYes

Female95

Level 1Ⅱb

F

Female53

Son’s spouse

Yes

Female87

Level 1

Ⅱb

G
H
I
J

FemaleFemale
Male
Male

61
60
86
81

Son’s spouse
Daughter
Husband
Husband

No
No
No
Yes

FemaleFemaleFemaleFemale

85
86
86
81

Level 1
Level 2
Level 2
Level 1Ⅰ
Ⅰ
Ⅱb
Ⅰ

Family structure
Son & daughter-in-law, 2
grandchildren
Son & daughter-in-law
Wife, son & daughter-in-law,and 2 grandchildren
Daughter and 2 grandchildren
Oldest daughter and son-inlaw, grandchild in couple, 1great-grandchild
Son & daughter-in-law, and 1
grandchild
Husband
Daughter and son-in-law
Husband
HusbandCopyright© 2013 JSHSS. All rights reserved.

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Asian Pacific Journal of Disease Management 2020; 9(1·2), 00-00

Table 2.

Achievement rate by family living capacity’s assessment scale index for each research subject
Achievement rate by family living capacity index (%)
Healthmaintenanceability

Copingability for
healthproblemNursingcareability

Utilization
ability forsocialresources

Housework
ability

A
B
C
D
E
F
G
H
I
J

70
80
75
100
70
80
60
60
70
60

100
100
50
62.5
87.5
62.5
62.5
87.5
100
75

91.7
83.3
91.7
83.3
100
75
75
41.7
83.3
75

100
100
100
100
100
60
100
100
100
100

100
100
100
80
100
80
100
60
100
100

80
80
80
80
100
40
60
40
80
100

100
100
100
40
100
20
40
20
100
100

100
100
100
100
100
100
100
100
100
100

100
100
100
100
100
100
100
100
100
100

Averageachievement
rate by index

71.0

78.8

80.0

96.0

92.0

74.0

72.0

100.0

100.0

Research
subjects

Table 3.
Type

Box type

Full
moon
type

Full moon type
Full moon typeBox type
Box type
Full moon typeBox type
Box type
Star type
Full moon type
Full moon type

Characteristics of nursing care experience with a family living capacity pattern
Category

Subcategory

Influence on mental health by nursing
careStar type

Role
Relation
Adjustment Management
Family living
reallocation/ adjustment/ ability forability forcapacity patterncomplemen- integrating
livingeconomy/tary ability
abilityenvironment household budget

Feel pain to deal with dementia
No time for myself due to nursing care

Lack of nursing care support by fam- Family members do not understand my symptom
Family members do not understand the necessity of nursing care cooperation
ily members
I can not find anyone to replace me for nursing care
I feel responsible as a caregiver
A sense of isolation by caregiver
I can not find anyone to replace me for housework
Support by nursing care staff andpublic decency

Nursing care staff are sympathizers for nursing care
I trust nursing care staff
I am worried about public decency when utilizing social resources

Physical and mental exhaustion bynursing care

I can not be involved with any social activity due to nursing care
No family member understands the hardship of nursing care for dementia
I am the only person who is exhausted by nursing care and houseworkStress can be manageable

Future concern for nursing care

I am concerned about the requirement of more nursing care in future
I have a difficulty to deal with dementia
Family members are frustrated by dementia

Nursing care is carried out mainly by one person
There are some cooperation for housework and nursing care by other family members
A huge burden on caregiver’s nursing I do not feel any necessity to discuss nursing care in the family
care
Family members do not want to provide nursing care for dementia
I can not ask my daughter-in-law for my spouse’s nursing care
Family roles in nursing care

Nursing care would smoothly be achieved if family members are involved
Family members are aware of nursing care for dementia elderly
I motivate myself for nursing care

Emotional swings in utilization of social resources by caregivers

Family members show understanding for utilizing social resources
I am concerned about family when utilizing social resources
I feel I am assessed by nursing care staff about nursing care

A life with care receiver as a family
memberReviewing a life with care receiver up to the present
A desire to live with care receiver
I hold care receiver in esteem
Consideration to care receiver

There is a cooperation for nursing care and housework by other family members
A good relation between care receiver
I consult with other family members for nursing careand family
Family members hold a relationship with care receiver
Mutual support in the family

Consideration to primary caregiver by other family members
Nursing care is mutually understood among family members
I can be emotionally strong with assistance from other family members

Understanding for utilization of social resources by family

I will have time for family by utilizing social resources
Family members understand to utilize social resources
Existence of nursing care staff becomes a mental support* “Dementia elderly” will be described as “Care receiver” in the table.

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A life ability and care experience of the care family of the dementia elderly person who lives at home5Star type
100.0

i

a
b

80.0
60.0
40.0

h

c

20.0
0.0

d

g

e

f

Box type
100.0

i

a
b

80.0
60.0
40.0

h

c

20.0
0.0

d

g
e

f

Full moon type
a
i

100.0

b

80.0
60.0
40.0

h

c

20.0
0.0

d

g

f

Figure 1.

ea: Health maintenance ability
b: Coping ability for health problem
c: Nursing care abilityd: U�liza�on ability for social resources
e: Housework ability
f: Role realloca�on/complementary ability
g: Rela�on adjustment/integra�ng ability
h: Adjustment ability for living environment
i: Management ability for economy/household budget

Average achievement rate of family living capacity in 9 areas by a family living capacity patterndeal with dementia>. The study found a poor mental
health for the research subjects when they felt concern
and became impatient with specific behaviors by dementia patients such as “Toileting assistance is a difficult task and I do not know what I should do if the frequency of stool is increased” and “Putting a half-eaten
food back into a pot and calling a gas company”.【Ahuge burden on caregiver’s nursing care】consisted of<I do not feel any necessity to discuss nursing care in
the family> and <Family members do not want to provide nursing care for dementia>. The research subjects
had a helpless feeling as “Family members help me forhousework but I solely provide nursing care (as primary caregiver)” and “Family members avoid to see andtalk about dementia”.【Family roles in nursing care】
consisted of <Family members are aware of nursing
care for care receiver> and <Nursing care wouldsmoothly be achieved if family members are involved>.
The subjects experienced that nursing care would successfully achieved with assistance from other family
members as “Care receiver would obediently accept ortake nursing care when a grand child is worried”. The
research subjects motivated themselves for daily nursing care by “I (primary caregiver) should be mentallystrong as long as I provide nursing care”.【Emotionalswings in utilization of social resources by caregivers】consisted of <I am concerned about family whenutilizing social resources> and <I feel I am assessed bynursing care staff about nursing care>. The researchsubjects were facing and providing nursing care withemotional ss as “I am afraid I would be blamed (by other family members) if sending a care receiver to an institution” and “Nursing care staff might think that family members totally leave nursing care tasks to otherpeople or non-family members”.
3) Nursing experience for the family of “Fullmoon type”【Care receiver and family life】consisted of <I
would like to live with care receiver> and <I hold carereceiver in esteem>. The research subjects held care receivers in esteem as a family member and value spend-

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Asian Pacific Journal of Disease Management 2020; 9(1·2), 00-00

ing time with them as “We walk through a life together
as leaning on each other” and “I avoid leaving a carereceiver alone but I do not provide any help for a thingthat a care receiver can do by himself/herself”.【A good
relationship between care receiver and family】consisted of <There is a cooperation for nursing care andhousework by other family members> and <I consult
with other family members for nursing care>. The research subjects recognized sufficient support from
“Brothers/sisters or my children living near by will helpme” and “I can consult with my husband for nursingcare”.【Mutual support in the family】 consisted of<Consideration to primary caregiver by other family
members> and <I can be emotionally strong with assistance from other family members>. The research subjects felt “Since a grand child worries about a healthcondition of caregiver or a medication to take on theday, family members already understand each other bydiscussion” and “I feel secured because someone will
come at the time of emergency”.【Understanding for
utilization of social resources by family】consisted of<I will have time for family by utilizing social resources> and <Family members understand to utilize social
resources>. The subjects recognized a good nursing
care condition as “Other family members ask me (caregiver) to use social resources for reducing care burden”
and “Using a daycare facility helps me to spend moretime with family”.

by family members】. When there is no cooperative situation due to no opportunity for discussing nursing careamong family member, it would generate an imbalanced role allocation in family and eventually cause aproblem in continuation of nursing care. Cooperationfrom family members and relatives will enhance a continuation of home care11). It is important to carry out aflexible role reallocation/complementary ability without forcing specific family members to work for nursing care and housework. While consulting nursing carewith trusted-nursing care professionals, family members had an emotional conflict with【Support by nursing care staff and public decency】when they desired toincrease care services but were concerned with a public
decency.

IV Discussion
1. Characteristics of nursing care experienceand life quality for “Star type” familyStar type indicated【Influence on mental health bynursing care】and physical symptom such as palpitation
appeared due to a painful burden by dementia. Caregivers who recognize their own unhealthy conditions may
hold a sense of a significant care burden21). Mental distress was recognized as an unhealthy condition alongwith a lower achievement rate of “health maintenanceability” in family living capacity. It was expected to
face a difficult situation to maintain a healthy life due tobuilt-up stress of nursing care and a limitation on time
for hobby or time to interact with friends. In addition,
because the achievement rate for “Nursing care ability”, “Housework ability”, “Role reallocation/complementary ability”, and “Relation adjustment/integrating
ability” was lower, it would indicate【A sense of isolation by caregiver】due to【Lack of nursing care support

2. Characteristics of nursing care experienceand life quality for “Box type” family
Box type includes【Physical and mental exhaustion by nursing care】. Because family members do notshow understanding of physical exhaustion and mental
stress caused by a limit of social activity due to hardship in nursing care. Caregivers with a health problem
and a higher burden by nursing care may easily cause alimit on work or daily life activity22). It was clarified
that the achievement rate of “Coping ability for healthproblem” in family living capacity indicated lower.
【Future concern for nursing care】was also recognized due to increasing concern for excessive workloadof nursing care in future such as toilet support meals. A
risk in continuing care was predicted since family
members would be confused and frustrated by dementia treatment. Family members also considered that
nursing care should be provided mainly by one family
member (not depending on daughter-in-law) due to ahesitation by a relation between daughter-in-law andmother-in-law. The study recognized【A huge burden
on caregiver’s nursing care】without a necessity of discussion for nursing care among family members. It wasclarified that a cooperative structure for nursing careand housework is insufficient, and an achievement rate
for “Role reallocation/complementary ability” and“Relation adjustment/integrating ability” in family living capacity was lower respectively. A caregiver could
be encouraged when other family members consider
care receive even a little. The importance on family
nursing was confirmed with the recognition of【Familyroles in nursing care】as mentioned previously.
While understanding the utilization of social re-

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A life ability and care experience of the care family of the dementia elderly person who lives at homesources with some hesitation to other family members,
caregivers did not want to give a negative impression tonursing care staff as negligence.【Caregiver’s emotional swings in utilization of social resources】was recognized for caregivers. Nursing care family can adjustcare amount by acquiring social supports, and it is necessary to restructure emotional feelings through self-observation in family members themselves12). It was suggested that utilization of social resources would include
emotional feelings not only for reduction in nursing
care burden but also for a desire to recognize a heavy
responsibility in nursing care practice.
3. Characteristics of nursing care experienceand life quality for “Full moon type” family
It was recognized that the achievement rate wasover 80% in 8 areas except “Health maintenance ability” of family living capacity. Labor and mental support
in a family role allocation could provide time/pleasure
to family and eventually lead to continuation of nursing
care20). By focusing on and reviewing for【A life withcare receiver as a family member】, it would pay a regard to such existence and contribute to form a good
relationship between care receiver and family. Family
members would foster respectful spirits or favors indaily life and such emotional affinity may possibly leadto continuation of nursing care23).【A good relationshipbetween care receiver and family】became【Mutual
support in the family】. It seems that mutual understanding in family holds a strong emotion as spendingtime together or helping each other in nursing care.
This would lead to consideration to caregiver’s mind
and provide an actual feeling to live together throughdaily nursing care. Social resources tend to be utilized
more in case of a high burden on nursing care15), buteven a care receiver with mild disability in our study
had a favorable nursing care environment with【Understanding for utilization of social resources by family】
for reducing a nursing care burden and securing timefor family. It was suggested that a fulfillment of cooperative activity for nursing care and housework generates
an affluent life, and caregivers also hold a sense of satisfaction with nursing care under such circumstance.
Although the degree of independence in daily life waslower in Full moon type compared to other types, theachievement rate for family living capacity was higher
due to the nursing care practice by family.

7

V Conclusion
From a viewpoint of nursing care experience byfamily living capacity pattern for dementia elderly athome, it was suggested that a nursing care support system would not be properly arranged and family members may feel uncertainty or even isolation in futurewhen physical health issue for nursing family, lack ofnursing care by family, and role allocation are notsmoothly solved. For maintaining a home-care life, itwill be important to have supports as teaching a family
health maintenance/dementia care, adjusting a role allocation of nursing care and housework by carefully
determining a relationship among the family members,
and encouraging cooperation by individual family
member.

VI Conclusion and limitation for thepresent study
The study targeted 10 family cases living with dementia elderly. When using a family living capacity
model with these cases, there would be a limitation tocomprehend an entire family only by an interview with
one family member. Moreover, it may be difficult togeneralize suggestions from the research with only one
case of Star type in family living capacity. Thus, it isnecessary to make a further examination by considering those issues and expanding research subjects in future.
Acknowledgment
The author would like to dedicate profound gratitude for the cooperation of all research subjects and related persons in the present study.

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