Psychoeducational Interventions for Family Caregivers of Seniors across Their Life Trajectory: An Evidence-Based Research Program to Inform Clinical Practice
Family caregivers of the elderly are growing in number and the care they are called upon to deliver in industrialized countries is becoming increasingly demanding and complex. Empirical research shows that the caregiving situation can have a significant impact on the health of these caregivers often on account of stress, physical and psychological exhaustion, and a sense of being overwhelmed. In this context, the quality of life of these caregivers depends in large part on professional educational and support interventions. The purpose of this paper is to present three innovative psychoeducational intervention programs developed and empirically tested by the research team of the Université de Montréal’s (Québec, Canada) Chair in Nursing Care for Seniors and Their Families over the past fifteen years. These interventions have been developed together with family caregivers experiencing different stressful situations across their care trajectory. The results of evaluative studies of these programs provide evidence to inform professional clinical practice. Future directions for caregiving research are discussed. 1. Introduction Family caregivers of the elderly are growing in number in North America, as in all industrialized countries, and the care they are called upon to deliver is becoming more complex. Research shows that caregiving can have a significant impact on their health. Indeed, caregiver health is often undermined by stress, physical and psychological exhaustion, and a sense of being overwhelmed—all ailments generated by the responsibilities of caring for their aging relatives [1, 2]. As a result, family caregivers are increasingly considered an at-risk clientele within the healthcare system and their quality of life (QoL) has come to depend on professional support in the form of educational interventions, counselling, and respite services. In response to the situation, numerous initiatives have been developed in the past few decades to help family caregivers. However, the results of evaluative research, systematic literature reviews, and meta-analyses regarding these initiatives have, in general, proved inconclusive [3–10]. In fact, the interventions and services developed have had modest effects at best and do not seem to have a significant influence on caregiver health and QoL. Among the reasons put forth to explain these conclusions, it appears above all that the elements of the proposed interventions are not specific enough to meet the particular needs of caregivers at the different stages of their trajectory. This trajectory often spans
References
[1]
M. Lopez-Hartmann, J. Wens, V. Verhoeven, and R. Remmen, “The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review,” International Journal of Integrated Care, vol. 12, no. 20, article e133, 2012.
[2]
R. Schulz and L. Martire, “Family caregiving of persons with dementia: prevalence, health effects, and support strategies,” The American Journal of Geriatric Psychiatry, vol. 12, pp. 240–249, 2004.
[3]
H. Brodaty, A. Green, and A. Koschera, “Meta-analysis of psychosocial interventions for caregivers of people with dementia,” Journal of the American Geriatrics Society, vol. 51, no. 5, pp. 657–664, 2003.
[4]
D. D. Cooke, L. McNally, K. T. Mulligan, M. J. G. Harrison, and S. P. Newman, “Psychosocial interventions for caregivers of people with dementia: a systematic review,” Aging and Mental Health, vol. 5, no. 2, pp. 120–135, 2001.
[5]
Haute Autorité de Santé, Synthesis of Best Practice Recommendations: Alzheimer and Related Diseases, Author, Paris, France, 2010.
[6]
M. S. Mittelman, H. Brodaty, A. S. Wallen, and A. Burns, “A three-country randomized controlled trial of a psychosocial intervention for caregivers combined with pharmacological treatment for patients with alzheimer disease: effects on caregiver depression,” The American Journal of Geriatric Psychiatry, vol. 16, no. 11, pp. 893–904, 2008.
[7]
H. Pusey and D. Richards, “A systematic review of the effectiveness of psychosocial interventions for carers of people with dementia,” Aging and Mental Health, vol. 5, no. 2, pp. 107–119, 2001.
[8]
S. S？rensen, M. Pinquart, and P. Duberstein, “How effective are interventions with caregivers? An updated meta-analysis,” Gerontologist, vol. 42, no. 3, pp. 356–372, 2002.
[9]
C. A. Thompson, K. Spilsbury, J. Hall, Y. Birks, C. Barnes, and J. Adamson, “Systematic review of information and support interventions for caregivers of people with dementia,” BMC Geriatrics, vol. 7, article 18, 2007.
[10]
S. H. Zarit and E. E. Femia, “A future for family care and dementia intervention research? Challenges and strategies,” Aging and Mental Health, vol. 12, no. 1, pp. 5–13, 2008.
[11]
S. H. Zarit and S. A. Leitsch, “Developing and evaluating community based intervention programs for Alzheimer's patients and their caregivers,” Aging and Mental Health, vol. 5, supplement 1, pp. S84–S98, 2001.
[12]
F. Ducharme, L. Beaudet, J. Ward, and A. Legault, Learning to Become a Caregiver!" Psychoeducational Program for Caregivers of an Elderly Relative Recently Diagnosed with Alzheimer’s Disease, Desjardins Research Chair in Nursing Care for Seniors and Their Families, Research Centre, Institut Universitaire de Gériatrie de Montréal, Montreal, Canada, 2012.
[13]
F. Ducharme, D. Trudeau, and J. Ward, Stress Management Psychoeducational Program for Caregivers of an Elderly Relative at Home, Desjardins Research Chair in Nursing Care for Seniors and Their Families, Research Centre, Institut Universitaire de Gériatrie de Montréal, Montreal, Canada, 2013.
[14]
F. Ducharme, L. Lévesque, M. Gendron, A. Legault, D. Trudeau, and J. Ward, Taking Care of Myself. An Intervention Program for Families of Seniors in Nursing Homes, Desjardins Research Chair in Nursing Care for Seniors and Their Families, Research Centre, Institut Universitaire de Gériatrie de Montréal, Montreal, Canada, 2010.
[15]
M. Pinquart and S. S？rensen, “Helping caregivers of persons with dementia: which interventions work and how large are their effects?” International Psychogeriatrics, vol. 18, no. 4, pp. 577–595, 2006.
[16]
M. Nolan, T. Ryan, P. Enderby, and D. Reid, “Towards a more inclusive vision of dementia care practice and research,” Dementia, vol. 1, no. 2, pp. 193–211, 2002.
[17]
H. Brodaty, M. Gresham, and G. Luscome, “The Prince Henry Hospital dementia caregivers' training programme,” International Journal of Geriatric Psychiatry, vol. 12, no. 2, pp. 183–192, 1997.
[18]
C. Aneshensel, L. Pearlin, J. Mullan, S. Zarit, and C. Whitlatch, Profiles in Caregiving: The Unexpected Career, Academic Press, San Diego, Calif, USA, 1995.
[19]
J. Keady and M. Nolan, “The dynamics of dementia: working together, working separately, or working alone?” in Partnerships in Family Care, M. Nolan, U. Lundh, G. Grant, and J. Keady, Eds., pp. 15–32, Open University Press, Philadelphia, Pa, USA, 2003.
[20]
D. R. Kuhn, “Caring for relatives with early stage Alzheimer's disease: an exploratory study,” The American Journal of Alzheimer's Disease and other Dementias, vol. 13, no. 4, pp. 189–196, 1998.
[21]
C. Wald, M. Fahy, Z. Walker, and G. Livingston, “What to tell dementia caregivers—the rule of threes,” International Journal of Geriatric Psychiatry, vol. 18, no. 4, pp. 313–317, 2003.
[22]
C. L. Lindgren, “The caregiver career,” Image, vol. 25, no. 3, pp. 214–219, 1993.
[23]
F. Ducharme, L. Beaudet, A. Legault, M.-J. Kergoat, L. Lévesque, and C. Caron, “Development of an intervention program for Alzheimer's family caregivers following diagnostic disclosure,” Clinical Nursing Research, vol. 18, no. 1, pp. 44–67, 2009.
[24]
F. C. Ducharme, L. L. Lévesque, L. M. Lachance et al., “Learning to become a family caregiver efficacy of an intervention program for caregivers following diagnosis of dementia in a relative,” Gerontologist, vol. 51, no. 4, pp. 484–494, 2011.
[25]
F. Ducharme, L. Lachance, L. Lévesque, S. Zarit, and M. J. Kergoat, “Maintaining the potential of a psychoeducational program: efficacy of a booster session after an intervention offered family caregivers at disclosure of a relative’s dementia diagnosis,” Aging and Mental Health. In press.
[26]
A. I. Meleis, L. M. Sawyer, E.-O. Im, D. K. H. Messias, and K. Schumacher, “Experiencing transitions: an emerging middle-range theory,” Advances in Nursing Science, vol. 23, no. 1, pp. 12–28, 2000.
[27]
E. Guba and Y. Lincoln, Fourth Generation Evaluation, Sage, Newbury Park, Calif, USA, 1989.
[28]
K. Bartholomew, G. Parcel, G. Kok, N. Gottlieb, and M. Fernandez, Planning Health Promotion Programs: An Intervention Mapping Approach, John Wiley and Sons, San Francisco, Calif, USA, 2011.
[29]
C. Clark, D. Chaston, and G. Grant, “Early interventions in dementia: carer-led evaluations,” in Partnerships in Family Care, M. Nolan, U. Lundh, G. Grant, and J. Keady, Eds., pp. 33–49, Open University Press, Philadelphia, Pa, USA, 2003.
[30]
L. West, Early Stage Dementia, Newleaf, Taunton, UK, 2nd edition, 2001.
[31]
S. H. Zarit, E. E. Femia, J. Watson, L. Rice-Oeschger, and B. Kakos, “Memory club: a group intervention for people with early-stage dementia and their care partners,” Gerontologist, vol. 44, no. 2, pp. 262–269, 2004.
[32]
R. Whittemore and M. Grey, “The systematic development of nursing interventions,” Journal of Nursing Scholarship, vol. 34, no. 2, pp. 115–120, 2002.
[33]
S. Kemmis and R. McTaggart, “Participatory action research,” in Handbook of Qualitative Research, N. Denzin and Y. Lincoln, Eds., pp. 567–605, Sage, Toronto, Canada, 2000.
[34]
L. M. . Wright, W. L. Watson, and J. M. Bell, Beliefs: the Heart of Healing in Families and Illness, Basic Book, New York, NY, USA, 1996.
[35]
A. Bandura, Self-Efficacy: The Exercise of Control, Freeman, New York, NY, USA, 1997.
[36]
A. Bandura, Self-Efficacy: The Sense of Personal Competence, de Boeck, Paris, France, 2003.
[37]
A. M. Zeiss, D. Gallagher-Thompson, S. Lovett, J. Rose, and C. McKibbin, “Self-efficacy as a mediator of caregiver coping: development and testing of an assessment model,” Journal of Clinical Geropsychology, vol. 5, no. 3, pp. 221–230, 1999.
[38]
D. . Hildebrand, J. Laing, and H. Rosenthal, Prediction Analysis of Cross-Classifications, Wiley, New York, NY, USA, 1977.
[39]
C. J. Whitlatch, S. H. Zarit, and A. von Eye, “Efficacy of interventions with caregivers: a reanalysis,” Gerontologist, vol. 31, no. 1, pp. 9–14, 1991.
[40]
M. A. Whisman, “The efficacy of booster maintenance sessions in behavior therapy: review and methodological critique,” Clinical Psychology Review, vol. 10, no. 2, pp. 155–170, 1990.
[41]
P. Stoltz, G. Udén, and A. Willman, “Support for family carers who care for an elderly person at home—a systematic literature review,” Scandinavian Journal of Caring Sciences, vol. 18, no. 2, pp. 111–119, 2004.
[42]
F. Ducharme, G. Pérodeau, and D. Trudeau, “Perceptions, coping strategies and expectations of elderly female natural caregivers within the context of the shift to ambulatory care,” Canadian Journal of Community Mental Health, vol. 19, no. 1, pp. 79–103, 2000.
[43]
F. Ducharme, P. Lebel, L. Lachance, and D. Trudeau, “Implementation and effects of an individual stress management intervention for family caregivers of an elderly relative living at home: a mixed research design,” Research in Nursing and Health, vol. 29, no. 5, pp. 427–441, 2006.
[44]
R. Lazarus and S. Folkman, Stress, Appraisal, and Coping, Springer, New York, NY, USA, 1984.
[45]
K. Rockwood, “Integration of research methods and outcome measures: comprehensive care for the frail elderly,” Canadian Journal on Aging, vol. 14, supplement 1, pp. 151–164, 1995.
[46]
F. Ducharme, D. Trudeau, C. Rowan, S. Savard, and P. Lebel, “Helping family caregivers manage their stress through online training: is it possible?” Counselling and Spirituality, vol. 28, no. 1, pp. 33–53, 2009.
[47]
F. Ducharme, V. Dubé, L. Lévesque, D. Saulnier, and F. Giroux, “An online stress management training program as a supportive nursing intervention for family caregivers of an elderly person,” Canadian Journal of Nursing Informatics, vol. 6, no. 2, 2011, http://cjni.net/journal/?p=1344.
[48]
L. I. Pearlin, J. T. Mullan, S. J. Semple, and M. M. Skaff, “Caregiving and the stress process: an overview of concepts and their measures,” Gerontologist, vol. 30, no. 5, pp. 583–594, 1990.
[49]
R. J. V. Montgomery and K. D. Kolosky, “Family caregiving: change, continuity, and diversity,” in InInterventions in Dementia Care: Toward Improving Quality of Life, M. P. Lawton and R. L. Rubinstein, Eds., pp. 143–171, Springer, New York, NY, USA, 2000.
[50]
M. C. Chenier, “Review and analysis of caregiver burden and nursing home placement: the multiple problems and variables affecting the caregiving relationships require multiple approaches and interventions,” Geriatric Nursing, vol. 18, no. 3, pp. 121–126, 1997.
[51]
M. J. Naleppa, “Families and the institutionalized elderly: a review,” Journal of Gerontological Social Work, vol. 27, pp. 87–111, 1996.
[52]
K. Hooker, S. R. Bowman, D. P. Coehlo et al., “Behavioral change in persons with dementia: relationships with mental and physical health of caregivers,” Journals of Gerontology B: Psychological Sciences and Social Sciences, vol. 57, no. 5, pp. P453–P460, 2002.
[53]
B. J. Kramer, “Husbands caring for wives with dementia: a longitudinal study of continuity and change,” Health and Social Work, vol. 25, no. 2, pp. 97–107, 2000.
[54]
P. McCallion, R. W. Toseland, and K. Freeman, “An evaluation of a family visit education program,” Journal of the American Geriatrics Society, vol. 47, no. 2, pp. 203–214, 1999.
[55]
F. Ducharme, L. Lévesque, M. Gendron, and A. Legault, “A program to promote the mental health of family caregivers of elderly demented parents in institution: Qualitative evaluation,” Clinical Nursing Research, vol. 10, no. 1, pp. 182–201, 2001.
[56]
F. Ducharme, L. Lévesque, L. Lachance, A. Legault, and M. Préville, “Taking care of myself: efficacy of an intervention program for caregivers of a relative suffering from dementia living in a long-term care setting,” Dementia, vol. 4, no. 1, pp. 23–47, 2005.
[57]
F. Ducharme, L. Lévesque, F. Giroux, and L. Lachance, “Follow-up of an intervention program for caregivers of a relative with dementia living in a long-term care setting: are there any persistent and delayed effects?” Aging and Mental Health, vol. 9, no. 5, pp. 461–469, 2005.
[58]
M. E. Yates, S. Tennstedt, and B.-H. Chang, “Contributors to and mediators of psychological well-being for informal caregivers,” Journals of Gerontology B: Psychological Sciences and Social Sciences, vol. 54, no. 1, pp. P12–P22, 1999.
[59]
M. A. Zimmerman, “Psychological empowerment: issues and illustrations,” The American Journal of Community Psychology, vol. 23, no. 5, pp. 581–599, 1995.
[60]
F. Béland and A. Lemay, “Dilemmas and values for a long-term services policy,” Canadian Journal on Aging, vol. 14, pp. 263–293, 1995.
[61]
Canadian Caregiver Coalition, “Framework for a caregiving strategy,” 2005, http://www.ccc-ccan.ca/.
[62]
National Family Caregivers Association, Caregivers Survey, 2000, National Family Caregivers Association, Kensington, Md, USA, 2000.
[63]
M. Nolan, G. Grant, and J. Keady, Understanding Family Care: A Multidimensional Model of Caring and Coping, Open University Press, Buckingham, UK, 1996.
[64]
B. van Meijel, C. Gamel, B. van Swieten-Duijfjes, and M. H. F. Grypdonck, “The development of evidence-based nursing interventions: methodological considerations,” Journal of Advanced Nursing, vol. 48, no. 1, pp. 84–92, 2004.
[65]
J.-L. Denis and J. Lomas, “Convergent evolution: the academic and policy roots of collaborative research,” Journal of Health Services Research and Policy, vol. 8, supplement 2, pp. 1–6, 2003.
[66]
B. C. K. Choi, T. Pang, V. Lin et al., “Can scientists and policy makers work together?” Journal of Epidemiology and Community Health, vol. 59, no. 8, pp. 632–637, 2005.
[67]
S. Folkman, M. Chesney, L. McKusick, G. Ironson, D. Johnson, and T. Coates, “Translating coping theory into an intervention,” in The Social Context of Coping, J. Eckenrode, Ed., pp. 239–260, Plenum Press, New York, NY, USA, 1991.
[68]
T. Kitwood, Dementia Reconsidered: The Person Comes First, Open University Press, Buckingham, UK, 1997.
[69]
D. Gauvreau and S. Gendron, Questions et Réponses sur la Maladie d’Alzheimer, Le Jour, Montréal, Canada, 1994.
[70]
K. L. Schumacher, B. J. Stewart, P. G. Archbold, M. J. Dodd, and S. L. Dibble, “Family caregiving skill: development of the concept,” Research in Nursing and Health, vol. 23, no. 3, pp. 191–203, 2000.
[71]
N. Carpentier and F. Ducharme, “Support network transformations in the first stages of the caregiver's career,” Qualitative Health Research, vol. 15, no. 3, pp. 289–311, 2005.
[72]
B. Trelaun, Conflits dans la Famille: Manuel pour Sortir des Querelles, Chronique Sociale, Lyon, France, 2003.
