Facilitating decision-making by people with dementia: is spousal support gendered?

References

• Ablitt , A. , Jones , G.V. and Muers , J. 2009 . Living with dementia: a systematic review of the influence of relationship factors . Aging & mental health , 13 ( 4 ) : 497 – 511 .
   PubMed Web of Science ®Google Scholar
• Acton , G.J. 2007 . Increasing social communication in persons with dementia . Research and theory for nursing practice: an international journal , 21 ( 1 ) : 32 – 44 .
   PubMedGoogle Scholar
• Adams , K.B. 2006 . The transition to caregiving: the experience of family members embarking on the dementia caregiving career . Journal of gerontological social work , 47 ( 3/4 ) : 3 – 29 .
   PubMedGoogle Scholar
• Baker , K.L. , Robertson , N. and Connelly , D. 2010 . Men caring for wives or partners with dementia: masculinity, strain and gain . Aging & mental health , 14 ( 3 ) : 319 – 327 .
   PubMed Web of Science ®Google Scholar
• Basit , T.N. 2003 . Manual or electronic? The role of coding in qualitative data analysis . Educational research , 45 : 143 – 154 .
   Web of Science ®Google Scholar
• Boyle , G. 2008 . The Mental Capacity Act 2005: promoting the citizenship of people with dementia? . Health and Social Care in the Community , 16 ( 5 ) : 529 – 537 .
   PubMed Web of Science ®Google Scholar
• Boyle, G., Dead Earnest Theatre Company and Buddha Films 2012. Decide for yourself! A film about making decisions when you have memory problems or dementia [online]. Available from: http://www.applied-social-research.brad.ac.uk/current-projects/decision-making-by-people-with-dementia/#d.en.81268
   Google Scholar
• Boyle, G. and Ludwin, K. 2012. Decide for yourself! A guide to making decisions for people with memory problems or dementia and their families. [online]. Available from: http://www.applied-social-research.brad.ac.uk/media/appliedsocialresearch/gboyle-Decision-making-handbook-english-language-version.pdf
   Google Scholar
• Boyle, G., 2013. ‘Can't cook, won't cook': men's involvement in cooking when their wives develop dementia. Journal of Gender Studies, Published online 29 April 2013, DOI:10.1080/09589236.2013.792728
   Google Scholar
• Bulanda , J. 2011 . Gender, marital power and marital quality in later life . Journal of women & aging , 23 : 3 – 22 .
   PubMed Web of Science ®Google Scholar
• Calcedo-Barba , A. 2007 . On measuring incapacity . Current opinion in psychiatry , 20 : 501 – 506 .
   PubMed Web of Science ®Google Scholar
• Carli , L. 2006 . “ Gender issues in workplace groups: effects of gender and communication style on social influence ” . In Gender and communication at work , Edited by: Barrett , M. 69 – 83 . London : Gower .
   Google Scholar
• Cleaver , F. 2007 . Understanding agency in collective action . Journal of human development , 8 ( 2 ) : 223 – 244 .
   Google Scholar
• Collopy , B.J. 1995 . “ Power, paternalism and the ambiguities of autonomy ” . In Enhancing autonomy in long-term care. Concepts and strategies , Edited by: Gamroth , L.M. , Semradek , J. and Tornquist , E.M. 3 – 14 . New York, NY : Springer .
   Google Scholar
• Davies , J.C. 2011 . Preserving the ‘us identity’ through marriage commitment while living with early-stage dementia . Dementia , 10 ( 2 ) : 217 – 234 .
   Google Scholar
• Department for Constitutional Affairs . 2007 . Mental Capacity Act 2005. Code of practice , London : Stationery Office .
   Google Scholar
• Department for Constitutional Affairs and Department of Health, 2005. Explanatory notes to Mental Capacity Act [online]. Available from: http://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpgaen_20050009_en.pdf [Accessed 8 October 2012]
   Google Scholar
• Department of Health, 2007. Mental Capacity Act 2005: community care and primary care training set [online]. Available from: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyandGuidance/DH_074491 [Accessed 8 October 2012]
   Google Scholar
• Department of Health, 2009. Living well with dementia. A national dementia strategy [online]. Available from: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_094058 [Accessed 8 October 2012]
   Google Scholar
• Dewing , J. 2007 . Participatory research. A method for process consent with persons with dementia . Dementia , 6 ( 1 ) : 11 – 25 .
   Google Scholar
• Donnelly , M. 2009 . Capacity assessment under the Mental Capacity Act 2005: delivering on the functional approach? . Legal studies , 29 ( 3 ) : 464 – 491 .
   Google Scholar
• Donnelly , M. 2011 . Commentary: determining best interests under the Mental Capacity Act 2005. In the matter of G (TJ) [2010] EWHC 3005 (COP) . Medical law review , 19 : 304 – 313 .
   PubMed Web of Science ®Google Scholar
• Duffy , J. , Basu , S. and Pearson , K. 2012 . Older people and legal advice – the need for joined up and creative approaches . Journal of social welfare & family law , 34 ( 1 ) : 31 – 47 .
   Google Scholar
• Dunn , L.B. and Jeste , D.V. 2001 . Enhancing informed consent for research and treatment . Neuropsychopharmacology , 24 : 595 – 607 .
   PubMed Web of Science ®Google Scholar
• Fine , M. and Glendinning , C. 2005 . Dependence, independence or inter-dependence? Revisiting the concepts of ‘care’ and ‘dependency’ . Ageing & society , 25 : 601 – 621 .
   Web of Science ®Google Scholar
• Fulford , K.W. , Thornton , T. and Graham , G. 2006 . Oxford textbook of philosophy and psychiatry , Oxford : Oxford University Press .
   Google Scholar
• Galpin , D. 2010 . Policy and the protection of older people from abuse . Journal of social welfare & family law , 32 ( 3 ) : 247 – 255 .
   Google Scholar
• Giddens , A. 1984 . The constitution of society: outline of the theory of structuration , Cambridge : Polity Press .
   Google Scholar
• Grove , N. 1999 . See what I mean: Interpreting the meaning of communication by people with severe and profound intellectual disabilities . Journal of applied research in intellectual disabilities , 12 ( 3 ) : 190 – 203 .
   Web of Science ®Google Scholar
• Harman , G. and Clare , L. 2006 . Illness representations and lived experience in early-stage dementia . Qualitative health research , 16 : 484 – 502 .
   PubMed Web of Science ®Google Scholar
• Harper , D. 2002 . Talking about pictures: a case for photo elicitation . Visual studies , 17 ( 1 ) : 13 – 26 .
   Google Scholar
• Hirschman , K.B. 2004 . How does an Alzheimer's disease patient's role in medical decision making change over time? . Journal of geriatric psychiatry and neurology , 17 ( 2 ) : 55 – 60 .
   PubMed Web of Science ®Google Scholar
• Hirschman , K.B. 2005a . Do Alzheimer's disease patients want to participate in a treatment decision and would their caregivers let them? . The gerontologist , 45 ( 3 ) : 381 – 388 .
   PubMed Web of Science ®Google Scholar
• Hirschman , K.B. 2005b . Would caregivers of Alzheimer disease patients involve their relative in a decision to use an AD-slowing medication? . American journal of geriatric psychiatry , 13 ( 11 ) : 1014 – 1021 .
   PubMed Web of Science ®Google Scholar
• Hockey , J. , Meah , A. and Robinson , V. 2004 . A heterosexual life: older women and agency within marriage and the family . Journal of gender studies , 13 ( 3 ) : 227 – 238 .
   Web of Science ®Google Scholar
• Keywood , K. 2003 . Gatekeepers, proxies, advocates? The evolving role of carers under mental health and mental incapacity law reforms . Journal of social welfare and family law , 25 ( 4 ) : 355 – 368 .
   Google Scholar
• Knapp, M., et al., 2007. Dementia UK: a report into the prevalence and cost of dementia [online]. Available from: http://alzheimers.org.uk/site/scripts/download_info.php?fileID = 2 (http://alzheimers.org.uk/site/scripts/download_info.php?fileID=2) [Accessed 8 October 2012]
   Google Scholar
• Langdon , S.A. , Eagle , A. and Warner , J. 2007 . Making sense of dementia in the social world: a qualitative study . Social science & medicine , 64 : 979 – 1000 .
   Web of Science ®Google Scholar
• Livingston , G. 2010 . Making decisions for people with dementia who lack capacity: qualitative study of family carers in the UK . British medical journal , 341 : 4184
   PubMedGoogle Scholar
• Mackenzie , C. and Stoljar , N. , eds. 2000 . Relational autonomy: feminist perspectives on autonomy, agency and the social self , Oxford : Oxford University Press .
   Google Scholar
• Marson , D.C. 1997 . Consistency of physician judgements of capacity to consent in mild Alzheimer's disease . American geriatrics society , 45 : 453 – 457 .
   PubMed Web of Science ®Google Scholar
• Maxmin , K. 2009 . Mental capacity to consent to treatment and admission decisions in older adult psychiatric inpatients . International journal of geriatric psychiatry , 24 : 1367 – 1375 .
   PubMed Web of Science ®Google Scholar
• Mayo , A.M. and Wallhagen , M.I. 2009 . Considerations of informed consent and decision-making competence in older adults with cognitive impairment . Research in gerontological nursing , 2 ( 2 ) : 103 – 111 .
   PubMed Web of Science ®Google Scholar
• McKillop , J. and Wilkinson , H. 2004 . Make it easy on yourself! Advice to researchers from someone with dementia on being interviewed . Dementia , 3 ( 2 ) : 117 – 125 .
   Google Scholar
• Mental Capacity Act . 2005 . London : HMSO .
   Google Scholar
• Miesen , B. 1992 . “ Attachment theory and dementia ” . In Caregiving in dementia , Edited by: Jones , G. and Miesen , B. 38 – 56 . London : Routledge .
   Google Scholar
• Miesen , B. and Jones , G.M. 2004 . “ The Alzheimer cafe concept: a response to the trauma, drama and tragedy of dementia ” . In Caregiving in dementia: research and applications , Edited by: Jones , G.M. and Miesen , B.L. (Vol. 3) , 307 – 333 . Hove : Brunner Routledge .
   Google Scholar
• Morris , J. 1993 . Independent lives, community care and disabled people , London : Macmillan .
   Google Scholar
• Morris, J., 2005. Citizenship and disabled people. report to the Disability Rights Commission [online]. Available from: http://www.leeds.ac.uk/disability-studies/archiveuk/morris/Citizenship_and_disabled_people_final.pdf [Accessed 8 October 2012]
   Google Scholar
• Moye , J. and Marson , D.C. 2007 . Assessment of decision-making capacity in older adults: an emerging area of practice and research . Journal of gerontology: psychological sciences , 62B ( 1 ) : P3 – P11 .
   Google Scholar
• Nystrom , K. and Lauritzen , S.O. 2005 . Expressive bodies: demented persons' communication in a dance therapy context . Health: an interdisciplinary journal for the social study of health, illness and medicine , 9 ( 3 ) : 297 – 317 .
   Web of Science ®Google Scholar
• Office of the Public Guardian . 2009 . Making decisions: a guide for family, friends and other unpaid carers , 4th ed. [online]. Available from: http://www.justice.gov.uk/downloads/protecting-the-vulnerable/mca/opg-602-0409.pdf [Accessed 8 October 2012]
   Google Scholar
• Public Guardian Board, 2009. Making legislative reform a reality. the Public Guardian's Board annual report 2009. Available from: http://www.parliament.uk/deposits/depositedpapers/2009/DEP2009-2687.pdf [Accessed 8 October 2012]
   Google Scholar
• Ribeiro , O. , Paul , C. and Nogueira , C. 2007 . Real men, real husbands: caregiving and masculinities in later life . Journal of aging studies , 21 : 302 – 313 .
   Web of Science ®Google Scholar
• Robinson , L. , Clare , L. and Evans , K. 2005 . Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples . Aging & Mental Health , 9 ( 4 ) : 337 – 347 .
   PubMed Web of Science ®Google Scholar
• Royal College of Psychiatrists . 2003 . Mental Capacity Bill: Evidence to the Joint Committee from the Royal College of Psychiatrists , London : RCP .
   Google Scholar
• Rummery , K. 2009 . A comparative discussion of the gendered implications of cash-for-care schemes: markets, independence and social citizenship in crisis? . Social policy & administration , 43 ( 6 ) : 634 – 648 .
   Web of Science ®Google Scholar
• Russell , R. 2001 . In sickness and in health. A qualitative study of elderly men who care for their wives with dementia . Journal of aging studies , 15 : 351 – 367 .
   Web of Science ®Google Scholar
• Shilling , C. 1999 . Towards an embodied understanding of the structure/agency relationship . British journal of sociology , 50 ( 4 ) : 543 – 562 .
   PubMed Web of Science ®Google Scholar
• Stefan , S. 1993 . Silencing the different voice: competence, feminist theory and the law . University of Miami law review , 47 ( 3 ) : 763 – 815 .
   PubMedGoogle Scholar
• Taylor , D. 2011 . Wellbeing and welfare: a psychosocial analysis of being well and doing well enough . Journal of social policy , 40 ( 4 ) : 777 – 794 .
   Google Scholar
• Tyrrell , J. , Genin , N. and Myslinski , M. 2006 . Freedom of choice and decision-making in health and social care. views of older patients with early-stage dementia and their carers . Dementia , 5 ( 4 ) : 479 – 502 .
   Google Scholar
• Walker , A.E. 2006 . Caregivers' experience of risk in dementia: the laser-ad study . Aging & mental health , 10 ( 5 ) : 532 – 538 .
   PubMed Web of Science ®Google Scholar
• Williams, V., et al., 2012. Making best interests decisions: people and processes. A national study of best interests decisions made in accordance with the Mental Capacity Act, A report to the Department of Health [online]. Available from: http://www.mentalhealth.org.uk/publications/bids-report/ [Accessed 8 October 2012]
   Google Scholar