Abstract
Future projections pointed to the direction that the persons who will be needing support by the healthcare systems will be well over their capacity. The increasing demand for care will place many more responsibilities on those who will be assuming the role of the informal caregiver. Over the years, informal caregivers have become an integral part of the care however without the appropriate recognition or support by the healthcare systems. This chapter provides an overview of the various models of informal caregivers’ involvement in care and how these can be chosen according to the needs of those on the receiving end of the care as well as the needs of the informal caregivers. The model of choice will also de depended on its exact purpose as well as the context where it will be implemented. The chapter continues with the discussion of the ways to support the role of the caregiver. Taking into consideration the fact that this role is highly demanding and complex, the support to be provided needs to be of equally extensive level. Finally, the chapter takes a look at the policy strategy that needs to be put in place in order to support informal caregiving over time.
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References
Pickard L, King D, Brimblecombe N, Knapp M (2015) The effectiveness of paid services in supporting unpaid carers’ employment in England. J Soc Policy 44(3):567–590
Pickard L (2015) A growing care gap? The supply of unpaid care for older people by their adult children in England to 2032. Ageing Soc 35:96–123
de Jong A, Kooiker S (2018) Regionale ontwikkelingen in het aantal potentiële helpers van oudere ouderen, 1975-2040. Planbureau voor de Leefomgeving. https://www.pbl.nl/sites/default/files/cms/publicaties/PBL_2018_Regionale-ontwikkelingen-in-het-aantal-potentiele-helpers-van-ouderen-tussen-1975-2040_3238.pdf
Janssen TL, Lodder P, de Vries J et al (2020) Caregiver strain on informal caregivers when providing care for older patients undergoing major abdominal surgery: a longitudinal prospective cohort study. BMC Geriatr 20:178. https://doi.org/10.1186/s12877-020-01579-8
Hoffmann F, Rodrigues R (2010) Informal carers: who takes care of them? Policy Brief 4/2010. European Centre, Vienna
Triantafillou J, Carretero S, Cordero L, Mingot K (2010) Informal care in the long-term care system European overview paper
Papastavrou E, Charalambous A, Tsangari H, Karayiannis G (2012) The burdensome and depressive experience of caring: what cancer, schizophrenia, and Alzheimer’s disease caregivers have in common. Cancer Nurs 35(3):187–194. https://doi.org/10.1097/NCC.0b013e31822cb4a0
Wang T, Molassiotis A, Chung BPM et al (2018) Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat Care 17:96. https://doi.org/10.1186/s12904-018-0346-9
Twigg J (1989) Models of carers: how do social care agencies conceptualise their relationship with informal carers? J Soc Policy 18(1):53–66
Naiditch M (2012) Protecting an endangered resource? Lessons from a European cross-country comparison of support policies for informal carers of elderly dependent persons. Questions d’Economie de la Sante 176:1–8
Peters M, Rand S, Fitzpatrick R (2020) Enhancing primary care support for informal carers: a scoping study with professional stakeholders. Health Soc Care Community 28(2):642–650. https://doi.org/10.1111/hsc.12898
Lin W (2019) The relationship between formal and informal care among Chinese older adults: based on the 2014 CLHLS dataset. BMC Health Serv Res 19(1):323. https://doi.org/10.1186/s12913-019-4160-8
Wacker RR, Roberto KA (2008) Community resources for older adults: programs and services in an era of change. Sage
Liu H (2021) Formal and informal care: complementary or substitutes in care for elderly people? Empirical Evidence From China SAGE Open April 2021. https://doi.org/10.1177/21582440211016413
Klimova B, Valis M, Kuca K et al (2019) E-learning as valuable caregivers’ support for people with dementia – a systematic review. BMC Health Serv Res 19:781. https://doi.org/10.1186/s12913-019-4641-9
Haberstroh J et al (2011) TANDEM: communication training for informal caregivers of people with dementia. Aging Mental Health 15(3):405, 9p–413
Eggenberger E, Heimerl K, Bennett MI (2013) Communication skills training in dementia care: a systematic review of effectiveness, training content, and didactic methods in different care settings. Int Psychogeriatrics 25
Peeters JM, Van Beek A, Meerveld J, Francke AL (2010) Informal caregivers of persons with dementia, their use of and needs for specific professional support: a survey of the National Dementia Programme. BMC Nurs 9:9
EUROCARERS (2016) Informal caregiving and learning opportunities: an overview of EU countries. TRACK project funded by the Erasmus+ Programme
Pavlidis G, Downs C, Kalinowski TB et al (2020) A survey on the training needs of caregivers in five European countries. J Nurs Manag 28:385–398
Lethin C, Hanson E, Margioti E, Chiatti C, Gagliardi C, Vaz de Carvalho C, Malmgren FA (2019) Support needs and expectations of people living with dementia and their informal carers in everyday life: a European study. Soc Sci 8(7):203
Markaki A, Malhotra S, Billings R et al (2021) Training needs assessment: tool utilization and global impact. BMC Med Educ 21:310. https://doi.org/10.1186/s12909-021-02748-y
World Health Organisation (2015) Supporting informal caregivers of people living with dementia. Retrieved from www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_informal_care.pdf?ua=1
Teles S, Paúl C, Sosa Napolskij M, Ferreira A (2020) Dementia caregivers training needs and preferences for online interventions: a mixed-methods study. J Clin Nurs 00:1–19
Boots LMM, de Vugt ME, van Knippenberg RJM, Kempen GIJM, Verhey FRJ (2014) A systematic review of internet-based supportive interventions for caregivers of patients with dementia. Int J Geriatr Psychiatry 29(4):331–344
Parra-Vidales E, Soto-PĂ©rez F, Perea-BartolomĂ© MV, Franco-MartĂn MA, Muñoz-Sánchez JL (2017) Online interventions for caregivers of people with dementia: a systematic review. Actas Espanolas de Psiquiatria 45(3):116–126
Saltbæk L, Karlsen RV, Bidstrup PE, Høeg BL, Zoffmann V, Horsbøl TA, Holländer NH, Svendsen MN, Christensen HG, Dalton SO, Johansen C (2019) MyHealth: specialist nurse-led follow-up in breast cancer. A randomized controlled trial - development and feasibility. Acta Oncol 58(5):619–626
Ramovš J, Ramovš A, Svetelšek A (2019) Informal carers training: in-group social learning as an effective method for quality care empowerment. Front Sociol (4):63
Ramovš J (ed) (2013) Staranje v Sloveniji – Raziskava o potrebah, zmožnostih in Stališčih Nad 50 let Starih Prebivalcev Slovenije (Ageing in Slovenia: survey on the needs, abilities and standpoints of the Slovene population aged 50 years and over. Summary of findings). Inštitut Antona Trstenjaka, Ljubljana. Available online at: http://www.inst-antonatrstenjaka.si/repository/IAT_Staranje_v_Sloveniji_povzetek_angl.pdf
UNECE. Policy Brief on Ageing No. 22, September 2019
Cottagiri SA, Sykes P (2019) Key health impacts and support systems for informal carers in the UK: a thematic review. J Health Soc Sci 4(2):173–198
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Charalambous, A. (2023). Future Directions. In: Charalambous, A. (eds) Informal Caregivers: From Hidden Heroes to Integral Part of Care . Springer, Cham. https://doi.org/10.1007/978-3-031-16745-4_12
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