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“The biggest problem we’ve ever had to face”: how families manage driving cessation with people with dementia

Published online by Cambridge University Press:  14 September 2015

Jacki Liddle ,
Amelia Tan ,
Phyllis Liang ,
Sally Bennett ,
Shelley Allen ,
David C. Lie  and
Nancy A. Pachana
Jacki Liddle*
Affiliation:
UQ Centre for Clinical Research, The University of Queensland, Brisbane, Queensland, Australia
Amelia Tan
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland, Australia
Phyllis Liang
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland, Australia
Sally Bennett
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland, Australia
Shelley Allen
Affiliation:
School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Queensland, Australia 4 Degrees, Brisbane, Queensland, Australia
David C. Lie
Affiliation:
Metro South Older Persons Mental Health Services, Brisbane, Queensland, Australia, and Centre for Research in Geriatric Medicine, The University of Queensland, Brisbane, Queensland, Australia
Nancy A. Pachana
Affiliation:
School of Psychology, The University of Queensland, Brisbane, Queensland, Australia
*
Correspondence should be addressed to: Dr. Jacki Liddle, Postdoctoral Research Fellow, UQ Centre for Clinical Research, The University of Queensland, Herston 4029, Queensland, Australia. Phone: +61-7-3346-5583; Fax: +61-7-3346-5509. Email: [email protected].
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Abstract

Background:

It is recognized that people with dementia are likely to need to stop driving at some point following diagnosis. Driving cessation can lead to negative outcomes for people with dementia and their family caregivers (FC), who often experience family conflict and tension throughout the process. Family experiences surrounding driving cessation have begun to be explored but warrant further examination.

Methods:

Using a descriptive phenomenological approach, semi-structured interviews were undertaken with key stakeholders, including 5 retired drivers with dementia, 12 FC, and 15 health professionals (HP). Data were analyzed inductively to explore the needs and experiences of people with dementia and FC.

Results:

The data revealed a range of possible interactions between people with dementia and FC. These were organized into a continuum of family dynamics according to levels of collaboration and conflict: in it together, behind the scenes, active negotiations, and at odds. At the in it together end of the continuum, people with dementia and FC demonstrated collaborative approaches and minimal conflict in managing driving cessation. At the at odds end, they experienced open conflict and significant tension in their interactions. Contextual factors influencing family dynamics were identified, along with the need for individualized approaches to support.

Conclusions:

The continuum of family dynamics experienced during driving cessation may help clinicians better understand and respond to complex family needs. Interventions should be tailored to families’ distinctive needs with consideration of their unique contextual factors influencing dynamics, to provide sensitive and responsive support for families managing driving cessation.

Keywords

qualitativecarersfamily dynamicscommunity mobilityadjustment
Type
Research Article
Information
International Psychogeriatrics , Volume 28 , Issue 1 , January 2016 , pp. 109 - 122
Copyright
Copyright © International Psychogeriatric Association 2015 

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References

Adler, G. (2010). Driving decision-making in older adults with dementia. Dementia, 9, 45–60. doi: 10.1177/1471301209350289.Google Scholar
Australian Bureau of Statistics (2013). Car nation. Available at: http://www.abs.gov.au/AUSSTATS/[email protected]/Lookup/4102.0Main+Features40July+2013#use; last accessed 24 October 2014.Google Scholar
Australian Institute of Health and Welfare (2012). Dementia in Australia. Cat. no. AGE 70. Canberra: AIHW. Available at: http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=10737422943.Google Scholar
Austroads (2012). Assessing Fitness to Drive for Commercial and Private Vehicle Drivers, 4th edn. Sydney, Australia: Austroads. Available at: https://www.onlinepublications.austroads.com.au/items/AP-G56-13.Google Scholar
Berg, L. (1988). Clinical dementia rating (CDR). Psychopharmacology Bulletin, 24, 637–639.Google Scholar
Berg–Weger, M., Meuser, T. M. and Stowe, J. (2013). Addressing individual differences in mobility transition counseling with older adults. Journal of Gerontological Social Work, 56, 201–218. doi: 10.1080/01634372.2013.764374.CrossRefGoogle ScholarPubMed
Byszewski, A. M., Molnar, F. J. and Aminzadeh, F. (2010). The impact of disclosure of unfitness to drive in persons with newly diagnosed dementia: patient and caregiver perspectives. Clinical Gerontologist, 33, 152–163. doi: 10.1080/07317110903552198.Google Scholar
Byszewski, A. M. et al. (2003). A continuing medical education initiative for Canadian primary care physicians: the driving and dementia toolkit: a pre- and postevaluation of knowledge, confidence gained, and satisfaction. Journal of the American Geriatrics Society, 51, 1484–1489. doi: 10.1046/j.1532-5415.2003.51483.x.CrossRefGoogle Scholar
Carmody, J., Potter, J., Lewis, K., Bhargava, S., Traynor, V. and Iverson, D. (2014). Development and pilot testing of a decision aid for drivers with dementia. BMC Med Inform Decis Mak, 14, 19.Google Scholar
Carmody, J., Traynor, V., Iverson, D. and Marchetti, E. (2013). Driving, dementia and Australian physicians: primum non nocere? Internal Medicine Journal, 43, 625–630. doi: 10.1111/imj.12161.CrossRefGoogle ScholarPubMed
Carmody, J., Traynor, V. and Marchetti, E. (2015). Barriers to qualitative dementia research: the elephant in the room. Qual Health Res, 25, 1013–1019.CrossRefGoogle ScholarPubMed
Carter, K., Monaghan, S., O’Brien, J., Teodorczuk, A., Mosimann, U. and Taylor, J. P. (2015). Driving and dementia: a clinical decision pathway. Int J Geriatr Psychiatry, 30, 210–216.CrossRefGoogle ScholarPubMed
Connell, C. M., Harmon, A., Janevic, M. R. and Kostyniuk, L. P. (2013). Older adults’ driving reduction and cessation: perspectives of adult children. Journal of Applied Gerontology, 32, 975–996. doi: 10.1177/0733464812448962.CrossRefGoogle ScholarPubMed
Croston, J., Meuser, T. M., Berg-Weger, M., Grant, E. A. and Carr, D. B. (2009). Driving retirement in older adults with dementia. Topics in Geriatric Rehabilitation, 25, 154–162.CrossRefGoogle ScholarPubMed
Curl, A. L., Stowe, J. D., Cooney, T. M. and Proulx, C. M. (2014). Giving up the keys: how driving cessation affects engagement in later life. The Gerontologist, 54, 423–433. doi: 10.1093/geront/gnt037.CrossRefGoogle ScholarPubMed
Dewing, J. (2007). Participatory research: a method for process consent with persons who have dementia. Dementia, 6, 11–25.Google Scholar
Dobbs, B. M., Harper, L. A. and Wood, A. (2009). Transitioning from driving to driving cessation: the role of specialized driving cessation support groups for individuals with dementia. Topics in Geriatric Rehabilitation, 25, 73. doi: 10.1097/01.TGR.0000346058.32801.95.CrossRefGoogle Scholar
Ducharme, F., Kergoat, M.-J., Antoine, P., Pasquier, F. and Coulombe, R. (2013). The unique experience of spouses in early-onset dementia. American Journal of Alzheimer's Disease and Other Dementias, 28, 634–641. doi: 10.1177/1533317513494443.CrossRefGoogle ScholarPubMed
Freeman, E. E., Gange, S. J., Munoz, B. and West, S. K. (2006). Driving status and risk of entry into long-term care in older adults. American Journal of Public Health, 96, 1254–1259.CrossRefGoogle ScholarPubMed
Gardezi, F. et al. (2006). Qualitative research on older drivers. Clinical Gerontologist, 30, 5–22. doi: 10.1300/J018v30n01_02.CrossRefGoogle Scholar
Gustafsson, L. A. et al. (2011). Participant feedback and satisfaction with the UQDRIVE groups for driving cessation. Canadian Journal of Occupational Therapy, 78, 110–117. doi: 10.2182/cjot.2011.2.6.CrossRefGoogle ScholarPubMed
Jett, K., Tappen, R. M. and Rosselli, M. (2005). Imposed versus involved: different strategies to effect driving cessation in cognitively impaired older adults. Geriatric Nursing, 36, 111–116. doi: 10.1016/j.gerinurse.2005.01.004.CrossRefGoogle Scholar
Langdridge, D. (2007). Phenomenological Psychology: Theory, Research, and Method. New York, NY: Pearson.Google Scholar
Leiber, E. and Weisner, T. S. (2010). Meeting the practical challenges of mixed methods research. In Tashakorri, A. and Teddlie, C. (eds.), SAGE Handbook of Mixed Methods in Social & Behavioral Research, 2nd edn (pp. 559–580). Thousand Oaks, CA: Sage.Google Scholar
Liddle, J., Bennett, S., Allen, S., Lie, D. C., Standen, B. and Pachana, N. A. (2013). The stages of driving cessation for people with dementia: needs and challenges. International Psychogeriatrics, 25, 2033–2046. doi: 10.1017/S1041610213001464.CrossRefGoogle ScholarPubMed
Liddle, J., Turpin, M., Carlson, G. and McKenna, K. (2008). The needs and experiences related to driving cessation for older people. The British Journal of Occupational Therapy, 71, 379–388.CrossRefGoogle Scholar
Meuser, T. M., Carr, D. B., Berg-Weger, M., Niewoehner, P. and Morris, J. C. (2006). Driving and dementia in older adults: implementation and evaluation of a continuing education project. The Gerontologist, 46, 680–687. doi: 10.1093/geront/46.5.680.Google Scholar
Mezuk, B. and Rebok, G. W. (2008). Social integration and social support among older adults following driving cessation. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 63, S298–S303. doi: 10.1093/geronb/63.5.S298.CrossRefGoogle ScholarPubMed
Molnar, L. J., Eby, D. W., St Louis, R. M. and Neumeyer, A. L. (2008). Promising Approaches for Promoting Lifelong Community Mobility. Ann Arbor, MI: Transport Research Institute, University of Michigan.Google Scholar
Patton, M. Q. (2002). Qualitative Research and Evaluation Methods, 3rd edn. Thousand Oaks, CA: Sage.Google Scholar
Perkinson, M. A. et al. (2005). Driving and dementia of the Alzheimer type: beliefs and cessation strategies among stakeholders. The Gerontologist, 45, 676–685.CrossRefGoogle ScholarPubMed
Snyder, C. H. (2005). Dementia and driving: autonomy versus safety. Journal of the American Academy of Nurse Practitioners, 17, 393–402. doi: 10.1111/j.1745–7599.2005.00070.x.Google Scholar
Sutter, M., Perrin, P. B., Chang, Y.-P., Hoyos, G. R., Buraye, J. A. and Arango-Lasprilla, J. C. (2014). Linking family dynamics and the mental health of Colombian dementia caregivers. American Journal of Alzheimer's Disease and Other Dementias, 29, 67–75. doi: 10.1177/1533317513505128.CrossRefGoogle ScholarPubMed
Taylor, B. D. and Tripodes, S. (2001). The effects of driving cessation on the elderly with dementia and their caregivers. Accident Analysis & Prevention, 33, 519–528. doi: http://dx.doi.org/10.1016/S0001-4575(00)00065-8.CrossRefGoogle ScholarPubMed
Thompson, C. A., Spilsbury, K., Hall, J., Birks, Y., Barnes, C. and Adamson, J. (2007). Systematic review of information and support interventions for caregivers of people with dementia. BMC Geriatrics, 7, 18–18. doi: 10.1186/1471-2318-7-18.CrossRefGoogle ScholarPubMed
Truzzi, A., Valente, L., Ulstein, I., Engelhardt, E., Laks, J. and Engedal, K. (2012). Burnout in familial caregivers of patients with dementia. Revista Brasileira de Psiquiatria, 34, 405–412. doi: 10.1016/j.rbp.2012.02.006.CrossRefGoogle ScholarPubMed
Vernooij-Dassen, M., Joling, K., van Hout, H. and Mittelman, M. S. (2010). The process of family-centered counseling for caregivers of persons with dementia: barriers, facilitators and benefits. International Psychogeriatrics, 22, 769–777. doi: doi:10.1017/S1041610210000050.CrossRefGoogle ScholarPubMed
Vrkljan, B. H. and Polgar, J. M. (2007). Driving, navigation, and vehicular technology: experiences of older drivers and their co-pilots. Traffic Injury Prevention, 8, 403–410. doi: 10.1080/15389580701576423.CrossRefGoogle ScholarPubMed
Wheatley, C. J., Carr, D. B. and Marottoli, R. A. (2014). Consensus statements on driving for persons with dementia. Occupational Therapy in Health Care, 28, 132–139.CrossRefGoogle ScholarPubMed
Whitlatch, C. J., Judge, K., Zarit, S. H. and Femia, E. (2006). Dyadic intervention for family caregivers and care receivers in early-stage dementia. The Gerontologist, 46, 688–694. doi: 10.1093/geront/46.5.688.CrossRefGoogle ScholarPubMed
Windsor, T. D., Anstey, K. J., Butterworth, P., Luszcz, M. A. and Andrews, G. R. (2007). The role of perceived control in explaining depressive symptoms associated with driving cessation in a longitudinal study. The Gerontologist, 47, 215–223.Google Scholar