Why do women continue caring

for their elderly relative?

Assoc Prof Dr Rahmah Mohd Amin

Department of Community Health

UKM Medical Centre

rahmahma@ppukm.ukm.my

Population Ageing is inevitable…

Many issues regarding old age…

Informal

Caregiving

burden…

Informal carer

Who are they?

• Families and women are the major

providers of elderly caregiving (3, 4)

• They are usually either the spouse,

daughters, or daughter-in-laws

• They play multiple roles apart from

the caregiving

Informal caregiver (5)

• Unpaid caregiving.

• Often go unnoticed.

• Is the backbone of America’s long-term care system.

• Involves substantial amount of time, dedication & perseverance.

• Leaders of all segments of society must acknowledge them as the notable strengths of nation’s families and communities .

• Most informal caregivers gain personal satisfaction from helping families.

� Support and sustain informal caregiving?

• 1 in 3 Americans provide informal unpaid care to family members or friends.

• Most common carried out by middle age adults.

• Up to age of 70 WOMEN are more likely to be caregivers (provide more hours and care for more than one person)

• Black women > white women to take the role.

• Majority are employed

• Differ by marital status (e.g married care for elderly parents, never married care for relative outside home, divorced care for friend or neighbours)

• Tend to be healthier than general group.

[Nat Survey of families & Household] (3)

Caregiving implications

• Pose greater financial challenges due to lost

of wages

– Early retirement, Reduce hour of working & time

out etc

• Health

– Middle age or older women who provide care for

an ill or disable spouse shown to have six times

likely to suffer from depression/anxious

symptoms (3)

Caregiving implications

• Increase risk in other physical impact

– Deprive of preventive health services (2)

– Coronary Heart Disease, HPT , Lower perceived

health status & poorer immune function (6)

• Socially deprived

Objective of today’s presentation…

Caregiving burden & factors

influencing it among women

carer of elderly stroke patients

in University Malaya

Medical Centre (UMMC)

Exploring why they

continue caring for

their elderly relatives

Methodology

• Cross-sectional

• Quantitatif & qualitative method

• Involving 96 female caregivers of elderly

stroke patients treated at UMMC from

January 2005 to May 2006.

Inclusion / Exclusion

• Caregiver� Female

� Age > 18 years old

� Live together with care recipients

� Main caretaker

� Minimal caregiving duration of four months

BUT exclude

� Paid carer

� Takes care of more than one patient

� Patient passed away

� Patient institutionalised for at least one year after discharged

• Patients

� Received treatment from UMMC

� Age ≥ 60 years old

� Have caregiver who can be identified

UMMC

Medical Department (n=120)

Neuro ward

n=30

Neuro Rhabilitation

n=30

Geriatric ward

n=30

Genral ward

n=30

Telefon individual name

Agree / Q

POSTED (n=50)

Uncontactable, no reply, disagree, do

not understand (n=70)

Complete Q returned (n=20)

Q not received,lost, quit, dead, not

completed (n=30)

Fig 1. Recruitment via post

UMMC

Medical Department

Geriatric clinic Neuro Rehabilitation clinic

List of patients identified

for follow-up

82 approached

Agreed and returned complete Q

(n=70)

12 refused:

-no time

-not interested

-not main carer

-female carer did

not turn up

-joined another

on-going study

Fig 2. Recruitment from clinics

Recruitment via home visit

• For qualitative interview

• n= 6

• Chosen purposively

• Researcher followed staff for home visit

• Approached those who fulfilled criteria and

approached during home visit

Some findings to share…

18

Response rate

Table 1: No of respondants

Method Response

N1 N2 Rate (%)

Post 50 20 40.0

Cinic 82 70 85.4

Home visit 6 6 100.0

TOTAL 138 96 -

Nota: N1 = Total offered; N2 = Total; agreed

20

Table 2: Distribution of Respondents by sociodemographic characteristics (n=96)

Sociodemography characteristics f %

Age (years) ≤39 24 25.0

40-59 51 53.1≥60 21 21.9

Ethnicity Malay 30 31.3

Chinese 37 38.5Indian 28 29.2Eurasian 1 1.0

Marital Status Single 17 17.7Married 68 70.8Divorce/separated 11 11.5

Education level Never attended school 4 4.2Primary level 18 18.8Secondary level 46 47.9College / Universitiy 28 29.2

Working status Housewife /Not working 37 38.5Self employed 4 4.2Government 18 18.8Private 17 17.7Retired 20 20.8

Family income (per month) ≤RM1500 20 20.8>RM1500 76 79.2

21

Table 3: Distribution of stroke patients (n=96)

Sociodemographic characteristics f %

Age (years) 60-74 47 49.0

75-84 40 41.7

≥85 9 9.4

Sex Male 40 41.7

Female 56 58.3

Ethnicity Malay 31 32.3

Chinese 36 37.5

Indian 29 30.2

No of children 0-1 4 4.2

2-5 65 67.7

>5 27 28.1

Presence of other Chronic illness

Diabetes 8 8.3

Hipertension 25 26.0

Others 63 65.7

22

Bedridden (37.5%)

Needed help (42.7%)

Independent (19.8%)

Figure 3

Stroke patients’ condition

23

Wife 1 5%

Daughter-in-law 16%

Daughter 64%

Relative 5%

Figure 4: Relationship with stroke patients

25

”Caring for such an elderly.. No easy way...but it is a responsibility.”

”Now I have extra work to do. Difficult to go out, have to sacrifice, what else can I do. Sometimes I do feel like cooking, sewing, perhaps do small business, But not now. I have to be patience. What to do. ”Your mum, so you have to take care of her”.

Themes

It is their

responsibility

A sacrifice

53 yr old Malay widow, primary

edu., stop work as factory worker

to be a carer. Live with 3

adolescent children and elder

brother age 57.

33 yr old Malay, had 4

children, carer to 72 yr old

mum in law.

26

No other choice ”I have no choice. Had to stop working. I don’t trust maid. Before when she [maid] took care of her mum, she [her mum] had frequent fall. That was why she had stroke.”

”difficult to handle his behaviour. At times I do feel angry with him. But most of the time I felt pity for him. Teach him to exercise, very lazy to do”

Felt pity

Themes

53 yr old Chinese, single, resigned

from private company. Two other

sibling living abroad.

Malay carer, takes

care of father 67 yr

old.

27

”Just take carelah.””Ok cause I am already retired. Nothing much to do....”

”Easy for me, cos I have

maid to help.”

Consider it as a

routine

There’s someone to

help

Theme

50 yr old Indian, married. Took early

retirement to be carer to 85 yr old

mum. Has 2 working daughters who

help out.

46 yr old Chinese clerk, working in

private company, stay with mum in

law 84 yr od with stroke

28

Burden rating

Table 4 Burden category (Zarit Burden interview)

Category Burden

f %

Rendah 62 64.6

Tinggi 34 35.4

Total 96 100.0

Jadual 5 : Thirteen (13) most useful strategies

Strategies Most usefull

(%)

Menjalani hidup satu hari pada satu masa (EC) 100Menerima situasi seadanya (EC) 99

Mempercayai diri sendiri dan kebolehan diri untuk menangani keadaan (EC) 98Menyedari tiada sesiapa yang perlu dipersalahkan (EC) 98

Menyedari orang yang dijaga tidak perlu dipersalahkan atas keadaannya (EC) 96Meletakkan kekuatan peribadi atau kepercayaan agama (EK) 96Mengadakan rutin tetap dan mengekalkannya (PS) 96Melegakan fikiran dengan cara seperti membaca, menonton tv (SM) 94

Mengingati semula semua kenangan gembira bersama orang yang dijaga (EC) 93Menyedari bahawa terdapat orang lain yang lebih teruk keadaannya (EC) 90Meluahkan masalah kepada orang yang dipercayai (PS) 90Memperuntukkan sedikit masa untuk diri sendiri (SM) 89

Menentukan keutamaan dan memberi tumpuan terhadapnya (PS) 86

Strategi: 8 Emosi Cognitif (EC); 3 Problem Solving(PS); 2 Stress Management (SM)

Coping Strategies

What can we conclude?

• Caregivers are mostly

– In reproductive age group

– Are married

• Recipients

– At least needing help

• Strong Filial Obligation

– Very close relative are carer

– Rated themselve as low burden

• Less ‘active’ coping strategies

Therefore…

• Stronger advocator for informal carer

– All aspect of need

– Explore more of their own needs

– Need to be taught of better coping skills

– Not to take for granted of ‘filial obligation’

• Advocating Healthy lifestyle to avoid

complications of chronic illnesses

• More respite care

References

1. Fatimah Abdullah (2006) Fungsi keluarga dalam penjagaan: isu dan cabaran.

Kertaskerja Seminar Psikologi Pembangunan Komuniti: Pendekatan

Psikososial dan Pengupayaan Komuniti. Anjuran ISM-UKM 22-23 Disember.

2. Zainuddin, J., Arokiasamy, J.T. & Poi, P.J.H. (2003) Caregiving burden is

associated with short rather than long duration od care for older persons.

Asia Pacific Journal of Public Health 15(2): 88-93.

3. http://aspe.hss.gov/daltcp/Reports/carebro2.pdf

4. Press release (2002, August) Reverberations of family illness: a longitudinal

assessment of informal caregiving and mental health status in the nurses’

health study. American Journal of Public Health.

5. http://www.aoa.gov/naic/may2000/factsheets/olderwomen.html

6. Lee, S.L., Colditz, G.A., Berkman, L.F. & Kawachi, I. (2003) Caregiving and

coronary heart disease in US women: A prospective study. American Journal

of Preventive Medicine 24(2): 113-119.