This research described family carers' experiences in accessing dementia information and services in Southern Tasmania, Australia. Focus groups were conducted around three topics: (i) information available to family carers prior to a formal diagnosis of dementia, (ii) sources of information following diagnosis, and (iii) means of transfer of information. Data analysis identified themes reflecting participants' progressive care experiences: from hurtful and dismissive attitudes towards initial requests for information and early diagnosis, to futile searching for information within a seemingly disorganized healthcare system, to eventual resolution of a kind whereby dementia services were finally procured for family members to varying degrees — all of which created emotional turmoil and delayed receipt of services. This study strongly emphasises the value of health professionals seriously and empathically hearing and acting upon family carers' requests for information and prompt diagnosis of dementia. In addition, there is a significant need to improve access and organization of information and services for people with dementia and their family carers.
Alzheimer's Association (2007) http://www.alz.org/news_and_events_rates_rise.asp Accessed 13 March 2007.
2.
Alzheimer's Australia. (2007). http://www.alzheimers.org.au Accessed 13 March 2007.
3.
ACAT (Aged Care Assessment Team). (2007). Canberra: Australian Government, Department of Health and Ageing. http://www.health.gov.au/internet/wcms/Publishing.nsf/Content/ageing-acatassess.htm Accessed 23 March 2007.
4.
ADI (Alzheimer's Disease International). ( 2007). http://www.alz.co.uk/Accessed 13 March 2007.
5.
Alzheimer Europe. (2007). http://www.alzheimer-europe.org Accessed 13 March 20/07.
6.
AIHW Australian Institute of Health and Welfare ( 2004). Aged care series No 8: AIHW Cat. No. AGE 41. Carers in Australia: Assisting older people and people with a frail disability. Canberra: AIHW.
7.
AIHW Australian Institute of Health and Welfare ( 2007). Dementia in Australia: National data analysis and development . Canberra: AIHW.
8.
Argimon, M., Limon, E., Vial, J., & Cabezas, C. (2004). Health-related quality of life in carers of patients with dementia. Family Practice, 21(4), 454-7.
9.
Brodaty, H., Thomson, C., Thompson, C., & Fine, M. (2005). Why caregivers of people with dementia and memory loss don't use services. International Journal of Geriatric Psychiatry, 20(6), 537-46.
10.
Bulsara, C., & Fynn, N. (2006). An exploratory study of GP awareness of carer emotional needs in Western Australia. BMC Family Practice , 7(33), published online 24 May.
11.
Carers, S.A. (2006). Show you care. Carer awareness campaign, State election, 2006. Unley, South Australia: Carers SA.
12.
Finkel, S., Czaja, S.J., Schulz, R., Martinovich, Z., Harris, C., & Pezzuto, D. (2007). E-Care: A telecommunications technology intervention for family caregivers of dementia patients. American Journal of Geriatric Psychiatry, 15, 443-8.
13.
Fortinsky, R.H., Unson, C., & Garcia, R.I. (2002). Helping family caregivers by linking primary care physicians with community-based dementia care services: The Alzheimer's service coordination program. Dementia, 1, 227-40.
14.
Grbich, C. (1999). Qualitative research in health: an introduction . St Leonards: Allen & Unwin .
15.
Hansen, E., Robinson, A., Mudge, P., & Crack, G. (2005). Barriers to provision of care for people with dementia and their carers in a rural community. Australian Journal of Primary Health, 11(1), 72-9.
16.
Hansen, E. (2006). Successful qualitative health research. Crows Nest: Allen & Unwin.
17.
Iliffe, S., & Wilcock, J. (2005). The identification of barriers to the recognition of, and response to, dementia in primary care using a modified focus group approach. Dementia, 4(1), 73-85.
18.
Jackson, J. (2004). Friend who left us the gift of hope. http://news.scotsman.com/topics.cfm?tid=129 Accessed 23 March 2007.
19.
Michon, A., Weber, K., Rudhard-Thomazic, V., Giannakopoulos, P. (2005). Dynamic process of family burden in dementia caregiving: A new field for psychotherapeutic interventions. Psychogeriatrics , 5(2), 48-54.
20.
Nolan, M., Ingram, P., &Watson, R. (2002). Working with family carers of people with dementia: negotiated coping as an essential outcome. Dementia, 1(1), 75-93.
21.
Pinner, G., & Bouman, W.P. (2003). Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis. International Psychogeriatrics, 15(3), 279-88.
22.
Powell Davies, G., Hu, W., McDonald, J., Furler, J., Harris, E., & Harris, M. (2006). Developments in Australian general practice 2000-2002: What did these contribute to a well functioning and comprehensive Primary Health Care System?Australia and New Zealand Health Policy , 3(1), 15 January. Available from http://www.anzhealthpolicy.com/contents/3/1/1
23.
Schultz, R., Hebert, R.S., Dew, M.A., Brown, S.L., Scheier, M.F., Beach, S.R., Czaja, S.J., Martire, L.M., Coon, D., Langa, K.M., Gitlin, L.N., Stevens, A.B., & Nichols, L. (2007). Patient suffering and caregiver compassion: new opportunities for research, practice, and policy. The Gerontologist , 47, 4-13.
24.
Scott, D., & Donnelly, M. (2005). The early identification of cognitive impairment . Dementia, 4(2), 207-232.
25.
Shankar, J., & Sonnai, S. (????) Support needs of family carers of people who experience mental illness and the role of mental health services. ARAFMI NSW
26.
Teel, C., & Carson, P. (2003). Family experiences in the journey through dementia diagnosis and care. Journal of Family Nursing, 9(1), 38-58.
27.
Thomas, P., Lalloue, F., Preux, P-M., Hazif-Thomas, C., Pariel, S., Inscale, R., Belmin, J., & Clement, J-P. (2005). Dementia patients' caregivers' quality of life: The PIXEL study. International Journal of Geriatric Psychiatry , 21(1), 50-56.
28.
Venables, D., Clarkson, P., Hughes, J., Burns, A., & Challis D. (2006) Specialist clinical assessment of vulnerable older people: Outcomes for carers from a randomised controlled trial. ( 2006). Ageing and Society, 26(x), 867-82.
