Alignment Between Informal Carers and Formal Dementia Care Workers: Perspectives on Community Service Delivery Dr Kate-Ellen J. Elliott 1 2 *, Dr Christine

Alignment Between Informal Carers and Formal Dementia Care Workers:

Perspectives on Community Service DeliveryDr Kate-Ellen J. Elliott 1 2 *, Dr Christine M. Stirling 2, Prof Andrew L. Robinson 2 and A/Prof Jennifer L. Scott 1 2. 1 School of Psychology, Faculty of Health Science, University of Tasmania, Private Bag 30, Hobart, Tasmania, Australia, 7001.2 Wicking Dementia Research and Education Centre, Faculty of Health Science, University of Tasmania, Private Bag 143, Hobart, Tasmania, Australia, 7001.

Do not reproduce without author permission © 2013

Dementia is a public health priority

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• In 2010, 35.6 million people had dementia worldwide • One new case every four seconds & will treble by 2050

• In 2011, 298,000 Australians had dementia• 62% were women, 74% were aged 75 and over, 70% lived

in the community• aged 65 +, almost 1 in 10 (9%) had dementia, aged 85 +, 3

in 10 (30%) had dementia. • 23,900 Australians under the age of 65 with dementia in

2011

(Access Economic, 2009; ABS, 2012; AIHW, 2007; Birch & Draper, 2008; Ferri et al, 2005; USAA, 2012; Wimo et al, 2003)

Dr K Elliott © 2013

• Most care for people with dementia is provided by family members or informal support systems in the community

• In Australia, estimates show that it would cost more than $30.5 billion per year to replace all informal dementia carers

• Enormous public health value of informal care can come at great cost to the carer (e.g., poor mental health)

• Projected shortage of more than 153,000 paid and unpaid carers for people with dementia by 2029

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Carers of people with dementia

(Access Economics, 2005;2009; Cuijpers, 2005; Wimo & Prince, 2010; Zarit & Femia, 2008)


Carers of people with dementia• Important source of the evaluation of the health and

aged care system

• Valuable resource for ideas and suggestions on future care packages and services

• Most research is focused on residential not community care service delivery• Even less on whether informal carers and paid formal

carers perspectives align

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(Lee et al., 2009; Litherland, 2008)


Aim

• to assess the alignment of care expectations for informal and formal carers of people with dementia living in the community

5Dr K Elliott © 2013

Methods• Qualitative data was collected and analysed

independently for community-based;• Informal dementia carers • Workshop

• Formal dementia care workers• Semi-structured interviews

• Data transcribed and coded for themes• Very good inter-coder reliability


Brief demographics compared


N= 61 (36 Informal carers; 25 formal care workers)

Similar practical caring roles & unmet needs• More information about dementia• in community awareness make roles easier

• Isolated• Informal carers felt “tied to the house”• Formal carers felt “working alone is a downside”

• Wanted more time to spend caring• Not just on practical tasks• Also to promote social support and interaction


Coping with care roles• Informal carers• Counselling and psychological assessment and treatment

• Formal care workers• Need for reflective work practices (e.g., regular meetings

with co-workers to discuss clients care needs and “debrief”)

• Both carer types• Want better access to financial assistance and resources

(e.g., electronic lift chairs)


Positive care relationship• Informal carers on workers

• “appreciative of workers”• “need acknowledgement of their good work”• “use kind speech”• “listen and act”

• Formal care workers on people with dementia and their carers• Personal need for interaction with others• Important skills included “listening”, “being respectful and empathic”

• Both carer types• Views on each other were generally positive, minority some concerns• Good relationship meant good care


Challenges for the care relationship• Informal carers

• “workers are good once they are established”• “workers need to care more” • “lack understanding about disability”

• Formal care workers • “conflict with carers and family members”• “unrealistic demands” of clients and• “unsupportive and critical families”

• Both carer types• Starting a relationship with a person with dementia


Workforce• Informal carers

• staff shortages can influence the continuity of care for the person with dementia

• low numbers of specialised health professionals in their area, • workers need training and knowledge of dementia

• Formal carer workers • more specialised training • higher levels of qualifications to be held by workers in dementia care in the

future. • changes in the clients they care for can be difficult to manage, particularly in

light of the loss of relationship and trust that was established over time• recognised that worker knowledge of dementia helps the caring role

• Both carer types• Worker continuity a concern


Community-based services• Informal carers

• operate under a “case management approach”,• as “enhanced communication within services”, and • “more flexibility” for individuals needs were required• “companionship” for care recipients a need

• Formal carer workers • more services were needed to focus on the social participation of people with

dementia• importance of making time to “have a cup of tea” to provide social interaction

• Both carer types• Community excursions and more social activities designed for people with

dementia were desired by carers. • improvements in funding would assist problems of access to resources for

people with dementia and their carers


Quotes“I would like to have more support ‘cos I am tied to the house. The two support workers are pleasant and helpful, but we want more skills and qualified workers”

A comment made by a female informal carer.

“There will be more clients and I think probably there has to be more information for us on how to handle the situation and more education for us. Like training, for example”

A comment made by a female formal care worker.


Strong alignment between carers• more information about the services available• better community understanding about dementia

needed• specialised training for workers was commonly

reported • a desire to improve the consistency of care • more flexible services

• Limitations – data collected using different methods


Conclusion• Carers want improvements in access to• information and support, • workforce training and • service delivery in the community setting.

• A broad approach should be applied to capacity building for community-based dementia care.• May include strategies that improve community dementia

awareness, workforce skills and organisational systems to reform future services.


References1. ABS. (2012 ). 3303.0 - Cause of Death, Australia, 2010. Canberra: Australian Bureau of Statistics.2. AE. (2009). Making Choices: Future Dementia Care; Projections, Problems and Preferences: Access Economics for Alzheimer's Australia.3. AE. (2005). The Economic Value of Informal Care, Report for Carers Australia by Access Economics: Carers Australia.4. AIHW. (2007). Dementia in Australia: National Data Analysis and Development: Cat. No. AGE 53. Canberra: Australian Institute of Health

and Welfare.5. Birch, D., & Draper, J. (2008). A critical literature review exploring the challenges of delivering effective palliative care to older people

with dementia. Journal of Clinical Nursing, 17(9), 1144-1163. doi: 10.1111/j.1365-2702.2007.02220.x6. Cuijpers, P. (2005). Depressive disorders in caregivers of dementia patients: A systematic review. Ageing and Mental Health, 9(4), 325-

330. doi:10.1080/136078605000900787. Ferri, C., Prince, M., Brayne, C., Brodaty, H., Fratiglioni, L., Ganguli, M., . . . Scazufca, M. (2005). Global prevalence of dementia: A Delphi

consensus study. Lancet 336, 2112-2117.8. Lee, I., Wang, H.-H., Chiou, C.-J. and Chang, S.-H. (2009). Family caregivers’ viewpoints towards quality of long-term care services for

community-dwelling elders in Taiwan. Health & Social Care in the Community, 17, 312-320.9. Litherland, R. (2008). Involving people with dementia in service development and evaluation. In M. Downs and B. Bowers (Eds.)

Excellence in Dementia: Research into Practice (pp. 397-413) London: Open University Press.10. Smith, J. A., Flowers, P. and Larkin, M. (2009). Interpretive Phenomenological Analysis: Theory, Method, and Practice. Thousand Oaks,

CA: Sage.11. USAA. (2009). 2009 Alzheimer's Disease Facts and Figures. Alzheimer’s and Dementia: The Journal of the Alzheimer's Association, 5(3),

234-270. doi:10.1016/j.jalz.2009.03.00112. WHO, & ADI. (2012). Dementia: A Public Health Priority. Geneva: World Health Organisation and Alzheimer's Disease International.13. Wimo, A., Winblad, B., Aguero-Torres, H., & von Strauss, E. (2003). The magnitude of dementia occurrence in the world. Alzheimer

Disease and Associated Disorders, 17(2), 63-67.14. Zarit, S. H., & Femia, E. E. (2008). A future for family care and dementia intervention research? Challenges and strategies. Ageing and

Mental Health, 12(1), 5-13. doi: 10.1080/13607860701616317


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Alignment Between Informal Carers and Formal Dementia Care Workers: Perspectives on Community Service Delivery Dr Kate-Ellen J. Elliott 1 2 *, Dr Christine