Alzheimer’s Association. (2008). 2008 Alzheimer’s disease
facts and figures. Chicago: AA.
Alzheimer’s Society. (2007). Dementia UK. London: AS.
Blieszner, R., & Shifflett, P.A. (1990). The effects of
Alzheimer’s disease on close relationships between
patients and caregivers. Family Relations, 39(1),
57–62.
Burgener, S., & Twigg, P. (2002). Relationships among
caregiver factors and quality of life in care recipients with
irreversible dementia. Alzheimer’s Disease and Associated
Disorders, 16(2), 88–102.
Carruth, A.K. (1996). Motivating factors, exchange patterns,
and reciprocity among caregivers of parents with and
without dementia. Research in Nursing and Health, 19(5),
409–419.
Chesla, C., Martinson, I., & Muwaswes, M. (1994).
Continuities and discontinuities in family members’
relationships with Alzheimer’s patients. Family Relations,
43(1), 3–9.
Clare, L., & Woods, R.T. (2005). Cognitive training and
cognitive rehabilitation for people with early-stage
Alzheimer’s disease: A review. Neuropsychological
Rehabilitation, 14(4), 385–401.
Clarke, C.L., & Keady, J. (2002). Getting down to brass
tacks: A discussion of data collection with people with
dementia. In H. Wilkinson (Ed.), The perspectives of people
with dementia. London: Jessica Kingsley.
Cooper, C., Katona, C., Orrell, M., & Livingston, G. (2008).
Coping strategies, anxiety and depression in caregivers
of people with Alzheimer’s disease. International Journal of
Geriatric Psychiatry, 23(9), 929–936.
Cuijpers, P. (2005). Depressive disorders in caregivers of
dementia patients: A systematic review. Aging and Mental
Health, 9(4), 325–330.
Daire, A.P. (2002). The influence of parental bonding on
emotional distress in care giving sons for a parent with
dementia. Gerontologist, 42(6), 766–771.
de Boer, M.E., Hertogh, C.M.P.M., Droes, R.M., Riphagen,
I.I., Jonker, C., & Eefsting, J.A. (2007). Suffering from
dementia – the patient’s perspective: A review of
the literature. International Psychogeriatrics, 19(6),
1021–1039.
de Vugt, M.E., Stevens, F., Aalten, P.E.A., Lousberg, R.,
Jaspers, N., Winkens, I., et al. (2003). Behavioural
disturbances in dementia patients and quality of the
marital relationship. International Journal of Geriatric
Psychiatry, 18(2), 149–154.
Department for Constitutional Affairs. (2005). Mental
capacity act. London: TSO.
Department of Health. (2005). Research governance
framework for health and social care (2nd ed.).
London: DH.
Donaldson, C., Tarrier, N., & Burns, A. (1997). The impact
of the symptoms of dementia on caregivers. British Journal
of Psychiatry, 170, 62–68.
Dunkin, J.J., & Anderson-Hanley, C. (1998). Dementia
caregiver burden – A review of the literature and guidelines
for assessment and intervention. Neurology, 51(1),
S53–S60.
Eloniemi-Sulkava, U., Notkola, I., Hamalainen, K.,
Rahkonen, T., Viramo, P., & Hentinen, M. (2002).
Spouse caregivers’ perceptions of influence of dementia
on marriage. International Psychogeriatrics, 14(1), 47–58.
Ettema, T.P., Droes, R.M., de Lange, J., Mellenbergh, G.J.,
& Ribbe, M.W. (2005). A review of quality of life
instruments used in dementia. Quality of Life Research,
14(3), 675–686.
Ferri, C.P., Prince, M., Brayne, C., Brodaty, H., Fratiglioni,
L., Ganguli, M., et al. (2005). Global prevalence of
dementia: A Delphi consensus study. Lancet, 366,
2112–2117.
Gallagher-Thompson, D., Dal Canto, P.G., Jacob, T., &
Thompson, L.W. (2001). A comparison of marital interaction
patterns between couples in which the husband
does or does not have Alzheimer’s disease. Journals of
Gerontology Series B – Psychological Sciences and Social
Sciences, 56(3), S140–S150.
Gilhooly, M.L.M. (1984). The impact of care-giving on caregivers:
Factors associated with the psychological wellbeing
of people supporting a dementing relative in the
community. British Journal of Medical Psychology, 57,
35–44.
Gilleard, C.J., Belford, H., Gilleard, E., Whittick, J.E., &
Gledhill, K. (1984). Emotional distress amongst the
supporters of the elderly mental infirm. British Journal of
Psychiatry, 145, 172–177.
Harris, P.B. (Ed.). (2002). The person with Alzheimer’s
disease. Baltimore: Johns Hopkins University Press.
Hellstrom, I., Nolan, M., & Lundh, U. (2007). Sustaining
‘couple hood’: Spouses’ strategies for living positively with
dementia. Dementia: The International Journal of Social
Research and Practice, 6(3), 383–409.
Hirschfeld, M. (1983). Homecare versus institutionalisation:
Family care giving and senile brain disease. International
Journal of Nursing Studies, 20(1), 22–32.
Horowitz, A., & Shindelman, L.W. (1983). Reciprocity and
affection: Past influences on current care giving. Journal of
Gerontological Social Work, 5(3), 5–20.
Hubbard, G., Downs, M., & Tester, S. (2002). Including the
perspectives of older people in institutional care during the
consent process. In H. Wilkinson (Ed.), The perspectives of
people with dementia. London: Jessica Kingsley.
Kitwood, T. (1997). Dementia reconsidered: The person comes
first. Buckingham, UK: Open University Press.
Kneebone, I.I., & Martin, P.R. (2003). Coping and caregivers
of people with dementia. British Journal of Health
Psychology, 8(1), 1–17.
Knop, D.S., Bergman-Evans, B., & McCabe, B.W. (1998).
In sickness and in health: An exploration of the perceived
quality of the marital relationship, coping and depression
in caregivers of spouses with Alzheimer’s disease. Journal
of Psychosocial Nursing, 36, 16–21.
Kramer, B.J. (1993). Marital history and the prior
relationship as predictors of positive and negative outcomes
among wife caregivers. Family Relations, 42(4),
367–375.
Lawrence, R.H., Tennstedt, S.L., & Assman, S.F. (1998).
Quality of the caregiver – care recipient relationship:
Does it offset negative consequences of care giving
for family caregivers? Psychology and Aging, 13(1),
150–158.
Lyons, K.S., Zarit, S.H., Sayer, A.G., & Whitlatch, C.J.
(2002). Care giving as a dyadic process: Perspectives from
caregiver and receiver. Journal of Gerontology, 57(3),
195–204.
Medical Research Council. (2007). MRC ethics guide:
Medical research involving adults who cannot consent.
London: MRC.
Morris, R.G., Morris, L.W., & Britton, P.G. (1988a).
Factors affecting the emotional wellbeing of the caregivers
of dementia sufferers. British Journal of Psychiatry, 153,
147–156.
Morris, L.W., Morris, R.G., & Britton, P.G. (1988b).
The relationship between marital intimacy, perceived
strain and depression in spouse care givers of dementia
sufferers. British Journal of Medical Psychology, 61(3),
231–236.
Murray, J., Schneider, J., Banerjee, S., & Mann, A. (1999).
EUROCARE: A cross-national study of co-resident
spouse carers for people with Alzheimer’s disease: A
qualitative analysis of the experience of care giving.
International Journal of Geriatric Psychiatry, 14, 662–667.
National Audit Office. (2007). Improving services and support
for people with dementia. London: TSO.
National Institute for Health and Clinical Excellence. (2006).
Dementia: Supporting people with dementia and their carers
in health and social care. London: NICE.
Neufeld, A., & Harrison, M.J. (1995). Reciprocity and
social support in caregivers’ relationships: Variations
and consequences. Qualitative Health Research, 5(3),
348–365.
Neufeld, A., & Harrison, M.J. (1998). Men as caregivers:
Reciprocal relationships or obligation? Journal of
Advanced Nursing, 28(5), 959–968.
Pratt, R. (2002). ‘Nobody’s ever asked me how I felt’.
In H. Wilkinson (Ed.), The perspectives of people with
dementia. London: Jessica Kingsley.
Quayhagen, M.P., & Quayhagen, M. (1996). Discovering life
quality in coping with dementia. Western Journal of
Nursing Research, 18(2), 120–135.
Quayhagen, M.P., & Quayhagen, M. (2001). Testing of
a cognitive stimulation intervention for dementia caregiving
dyads. Neuropsychological Rehabilitation, 11(3&4),
319–332.
Rankin, E.D., Haut, M.W., & Keefover, R.W. (2001).
Current marital functioning as a mediating factor in
depression among spouse caregivers in dementia. Clinical
Gerontologist, 23, 27–44.
Robinson, K.M. (1990). Predictors of burden among wife
caregivers. Scholarly Inquiry for Nursing Practice, 4(3),
189–203.
Savundranayagam, M.Y., Hummert, M.L., & Montgomery,
R.J.V. (2005). Investigating the effects of communication
problems on caregiver burden. Journals of Gerontology
Series B – Psychological Sciences and Social Sciences,
60(1), S48–S55.
Seiffer, A., Clare, L., & Harvey, R. (2005). The role of
personality and coping style in relation to awareness of
current functioning in early-stage dementia. Aging and
Mental Health, 9(6), 535–541.
Smits, C.H.M., de Lange, J., Droes, R.M., Meiland, F.,
Vernooij-Dassen, M., & Pot, A.M. (2007). Effects of
combined intervention programmes for people with
dementia living at home and their caregivers: A systematic
review. International Journal of Geriatric Psychiatry,
22(12), 1181–1193.
Sorensen, S., Duberstein, P., Gill, D., & Pinquart, M. (2006).
Dementia care: Mental health effects, intervention strategies,
and clinical implications. Lancet Neurology, 5(11),
961–973.
Steadman, P.L., Tremont, G., & Davis, J.D. (2007).
Premorbid relationship satisfaction and caregiver burden
in dementia caregivers. Journal of Geriatric Psychiatry and
Neurology, 20(2), 115–119.
Townsend, A.L., & Franks, M.M. (1995). Binding ties:
Closeness and conflict in adult children’s caregiving
relationships. Psychology and Aging, 10(3), 343–351.
Townsend, A.L., & Franks, M.M. (1997). Quality of the
relationship between elderly spouses: Influence on spouse
caregivers’ subjective effectiveness. Family Relations, 46(1),
33–39.
Uchino, B.N., Kiecolt-Glaser, J.K., & Cacioppo, J.T. (1994).
Construals of preillness relationship quality predict
cardiovascular response in family caregivers of
Alzheimer’s disease victims. Psychology and Aging, 9(1),
113–120.
Whitlatch, C.J. (2001). Including the person with dementia in
family care-giving research. Aging and Mental Health,
5(S1), S20–S22.
Whitlatch, C.J., Judge, K., Zarit, S.H., & Femia, E. (2006).
Dyadic intervention for family caregivers and care
receivers in early-stage dementia. Gerontologist, 46(5),
688–694.
Wilkinson, H. (Ed.). (2002). The perspectives of people with
dementia: Research methods and motivations. London:
Jessica Kingsley.
Williamson, G.M., & Schulz, R. (1990). Relationship
orientation, quality of prior relationship, and distress
among caregivers of Alzheimer’s patients. Psychology and
Aging, 5(4), 502–509.
Williamson, G.M., & Shaffer, D.R. (2001). Relationship
quality and potentially harmful behaviors by spousal
caregivers: How we were then, how we are now.
Psychology and Aging, 16(2), 217–226.
Woods, R.T. (2001). Discovering the person with
Alzheimer’s disease: Cognitive, emotional and behavioural
aspects. Aging and Mental Health, 5(2), 7–16.
Woods, R.T., Wills, W., Higginson, I.J., Hobbins, J., &
Whitby, M. (2003). Support in the community for people
with dementia and their carers: A comparative outcome
study of specialist mental health service interventions.
International Journal of Geriatric Psychiatry, 18(4),
298–307.
Wright, L.K. (1991). The impact of Alzheimer’s disease on
the marital relationship. Gerontologist, 31(2), 224–237.
Wuest, J., Ericson, P.K., & Stern, P.N. (1994). Becoming
strangers – the changing family care-giving relationship in
Alzheimer’s disease. Journal of Advanced Nursing, 20(3),
437–443.
Yale, R., & Snyder, L. (2002). The experience of support
groups for persons with early-stage Alzheimer’s disease
and their families. In P.B. Harris (Ed.), The person
with Alzheimer’s disease. Baltimore: Johns Hopkins
University Press.