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 WOMENare 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
Exploring why they continue caring for their elderly relatives Caregiving burden & factors influencing it among women carer of elderly stroke patients in University Malaya Medical Centre (UMMC) Cross-sectional Methodology 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 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 18
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 38.5 Indian 28 29.2 Eurasian 1 1.0 Marital Status Single 17 17.7 Married 68 70.8 Divorce/separated 11 11.5 Education level Never attended school 4 4.2 Primary level 18 18.8 Secondary level 46 47.9 College / Universitiy 28 29.2 Working status Housewife /Not working 37 38.5 Self employed 4 4.2 Government 18 18.8 Private 17 17.7 Retired 20 20.8 Family income (per month) RM1500 20 20.8 >RM1500 76 79.2 20
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 21 Stroke patients condition Independent (19.8%) Bedridden (37.5%) Needed help (42.7%) Figure 3 22
Figure 4: Relationship with stroke patients Daughter-in-law 16% Relative 5% Daughter 64% Wife1 5% 23
Themes It is their responsibility Caring for such an elderly.. No easy way...but it is a responsibility. 33 yr old Malay, had 4 children, carer to 72 yr old mum in law. 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. 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. 25 Themes No other choice 53 yr old Chinese, single, resigned from private company. Two other sibling living abroad. 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. Felt pity Malay carer, takes care of father 67 yr old. 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 26
Theme Consider it as a routine Just take carelah. Ok cause I am already retired. Nothing much to do... 50 yr old Indian, married. Took early retirement to be carer to 85 yr old mum. Has 2 working daughters who help out. There s someone to help Easy for me, cos I have maid to help. 46 yr old Chinese clerk, working in private company, stay with mum in law 84 yr od with stroke 27 Burden rating Table 4 Burden category (Zarit Burden interview) Category Burden f % Rendah 62 64.6 Tinggi 34 35.4 Total 96 100.0 28
Coping Strategies Jadual 5 : Thirteen (13) most useful strategies Strategies Most usefull (%) Menjalani hidup satu hari pada satu masa (EC) 100 Menerima situasi seadanya (EC) 99 Mempercayai diri sendiri dan kebolehan diri untuk menangani keadaan (EC) 98 Menyedari tiada sesiapa yang perlu dipersalahkan (EC) 98 Menyedari orang yang dijaga tidak perlu dipersalahkan atas keadaannya (EC) 96 Meletakkan kekuatan peribadi atau kepercayaan agama (EK) 96 Mengadakan rutin tetap dan mengekalkannya (PS) 96 Melegakan fikiran dengan cara seperti membaca, menonton tv (SM) 94 Mengingati semula semua kenangan gembira bersama orang yang dijaga (EC) 93 Menyedari bahawa terdapat orang lain yang lebih teruk keadaannya (EC) 90 Meluahkan masalah kepada orang yang dipercayai (PS) 90 Memperuntukkan 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) 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 dancabaran. 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: alongitudinal 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.