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11Family caregivers© Chaz HendricksonThe philosophy of palliative care is that the personreceiving palliative care and his or her familycomprise the unit of care. Supporting the familyis therefore a key part of palliative care. Familycaregivers can provide help with personal care alongwith emotional, social and financial support. Theyoften perform tasks that used to be performed byqualified nurses, such as assessing and managingsymptoms and giving medication (1).The availability of informal caregivers is a keyfactor in determining whether older people arecared for and die at home if they want to (2). Insome cultures in the European Region, especiallysouthern countries such as Spain and south-easterncountries such as Bulgaria, caring for older membersof the family at home is considered the norm. Olderpeople remain at home, where they are cared for bytheir family, usually women. However, family sizesare decreasing, and a larger proportion of middleagedwomen (who have traditionally performed therole as caregivers) are in full-time employment.Caregiving can be rewarding when caregiversfeel that they have improved the quality of life fora loved one (3). Sometimes, however, the burdencan result in physical and emotional exhaustion,conflicting emotions, restrictions on the caregiver’sown life and a strain on financial resources. Further,caregivers are often older people with healthproblems of their own.Despite the importance of informal caregivers,relatively few interventions have been aimed atspecifically supporting them (4). Palliative careservices tend to focus primarily on the peoplereaching the end of life, and the extent to whichthey help informal caregivers is sometimes notclear. Understanding the factors that influence theinformal caregivers’ ability to cope with their roleis an important step towards informing policymakers,clinicians and nurses to help reduce theburden associated with caregiving. This includesdesigning educational programmes or traininginitiatives specifically for caregivers to enhance theirknowledge and confidence and to ease difficulty incaring for older people at home (Box 11.1).36
Financial help, such as the paid compassionateleave from work introduced in Canada, may also helpto reduce the burden of informal caregiving (5,6).Family caregivers in Canada can receive up to 55%of their average insured earnings over a six-weekperiod to enable them to care for a family member.Other national programmes for financial compensationof informal caregivers exist in Australia,France, Germany, Israel, Norway, the Netherlands,Sweden, the United Kingdom and the United Statesof America.They include:• direct financial compensation: salary, wages,allowances and vouchers;• indirect compensation: third-party payment ofpension credits or insurance premiums or taxrelief; and• labour policy: paid leave from work, incomesupport or replacement and establishing jobsecurity.Box 11.1. A group programme for family caregiversA programme developed by a group in Victoria (Australia) prepares family caregivers to support someonewith advanced cancer at home. The three weekly 1.5-hour group sessions involve a mix of presentations,group work and question-and-answer sessions. Caregivers found that this helped to prepare them for thecaring role, and most reported positive changes in their lives. The programme makes efficient use of availablemultidisciplinary specialist palliative staff and can be readily integrated into practice with minimal extra resources.The approximate time commitment for the facilitator for an intervention is one day per week for five weeks.The programme is currently being evaluated in the United Kingdom.Source: Hudson et al. (7).References1. Hoffmann RL, Mitchell AM. Caregiver burden: historicaldevelopment. Nursing Forum, 1998, 33(4):5–12.2. Gomes B, Higginson IJ. Factors influencing death at homein terminally ill patients with cancer: systematic review. BritishMedical Journal, 2006, 332:515–521.3. Cohen CA, Colantonio A, Vernich L. Positive aspects ofcaregiving: rounding out the caregiver experience. InternationalJournal of Geriatric Psychiatry, 2002, 17:184–188.4. Harding R, Higginson IJ. What is the best way to helpcaregivers in cancer and palliative care? A systematic literaturereview of interventions and their effectiveness. PalliativeMedicine, 2003, 17:63–74.5. Williams A et al. Canada’s compassionate care benefit: viewsof family caregivers in chronic illness. International Journal ofPalliative Nursing, 2006, 12:438–445.6. Keefe J, Fancey P, White S. Consultation on financialcompensation initiatives for family caregivers of dependentadults – final report. Halifax, Mount Saint Vincent University,2005 (http://www.msvu.ca/mdcaging/pdfs/consultation exec_summary english.pdf, accessed 1 December 2010).7. Hudson P et al. Evaluation of a psycho-educational groupprogramme for family caregivers in home-based palliativecare. Palliative Medicine, 2008, 22:270–280.37
Page 1: PALLIATIVE CAREFOR OLDER PEOPLE:BET
Page 4 and 5: AbstractPopulations around the worl
Page 7 and 8: ForewordSocieties in the WHO Europe
Page 9 and 10: AcknowledgementsThe WHO Regional Of
Page 11 and 12: 1IntroductionPalliative care is an
Page 13 and 14: By 2050, estimates indicate that mo
Page 15 and 16: • training of health care profess
Page 17 and 18: individuals and their families. Hea
Page 20: Fig. 3.2. Factors associated with p
Page 23 and 24: (Table 4.1). After 15 years, more t
Page 25 and 26: • the last days of life and death
Page 27 and 28: Box 4.4. Gerontology Institute “1
Page 29 and 30: 5National awareness“You matter be
Page 31 and 32: 6Educational interventionsA well-pe
Page 33 and 34: Box 6.3. European Association for P
Page 35 and 36: initiated at an early stage in the
Page 37 and 38: 8Improving care for older people in
Page 39 and 40: 9Improving palliative care for olde
Page 41 and 42: Box 9.3. Training in end-of-life ca
Page 43 and 44: 10Improving palliative care for old
Page 45: References1. Higginson IJ, Sen-Gupt
Page 49 and 50: (Box 12.2). Several drugs can often
Page 51 and 52: 13Advance care planningAdvance care
Page 53 and 54: References1. Advance care planning:
Page 55 and 56: References1. Campbell H et al. Inte
Page 57 and 58: Box 15.1. Bus rounds as an educatio
Page 59 and 60: palliative care research initiative
Page 61 and 62: References1. Currow DC et al. A fra
Page 63 and 64: • Promote public awareness of pal
Page 65 and 66: 3. Invest in creative research into
Page 67 and 68: GermanyEberhard KlaschikCentre for
Page 69 and 70: United Kingdom (continued)Marilyn K
Page 71 and 72: The Maruzza Lefebvre D’Ovidio Fou

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