„UnderstAID – a platform that helps informal caregivers to understand and aid their demented relatives” – assessment of informal caregivers – a pilot study

Julia Jajor, Marta Rosołek, Elżbieta Skorupska, Agnieszka Krawczyk-Wasielewska, Przemysław Lisiński, Ewa Mojs, Włodzimierz Samborski

Abstract


Introduction. The number of people with dementia increases. Patients are dependent of informal care provided by their family members, especially spouses, children and friends. As the disease progresses caregiving becomes more complex, stressful and demanding. The needs of informal caregivers are related to the lack of professional support in care, including information about the disease, advise of management of its symptoms and social and financial support. It is therefore important to create an information tool which will assist caregivers in their daily work with people with dementia.
Aim. The aim of the study was the technical evaluation of the information platform for caregivers of patients with dementia.
Material and methods. The study involved 18 caregivers of patients with Alzheimer's disease. The level of GDS scale comprised those between 4 and 7. Platform testing had been carried out from 15 February to 15 March 2015. Evaluation of the platform was made using a technical questionnaire depending on the result of the GDS and the Zarit scale.
Results and conclusions. Platform was rated positively by caregivers (average score 4 out of 5) with the exception of a few areas which received an average rating of 3. These areas include: usefulness of the guidance provided for the application (26% of respondents assessed it negatively), ease to find the relevant information (25% negative assessments), application responsiveness (24% negative assessments) and the quality of the media files (23% negative assessments). Respondents assessed the platform positively, although some technical issues need improvement.

Keywords


dementia; caregivers; software

Full Text:

PDF

References


Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci 2009 Jun;11(2):217.

Dang S, Badiye A, Kelkar G. The dementia caregiver – a primary care approach. J South Med 2008;101(12): 1246–1251.

Commissaris CJ, Jolles J, Verhey FRJr, Kok GJ. Problems of caregiving spouses of patients with dementia. Patient Edu Counsel. 1995;25(2):143–149.

Connell CM, Janevic MR, Gallant MP. The costs of caring: impact of dementia on family caregivers. J Geriatr Psych Neur. 2001;14(4):179–187.

Kaczmarek M, Durda M, Skrzypczak M, Szwed A. Ocena jakości życia opiekunów osób z chorobą Alzheimera (Evaluation of life quality of people with Alzheimer’s disease caregivers). Gerontol Pol. 2010;18(2):86–94.

Andren S, Elmstahl S. The relationship between caregiver burden, caregivers' perceived health and their sense of coherence in caring for elders with dementia. J Clin Nurs. 2008;17(6):790–799.

Alspaugh ME, Stephens MA, Townsend AL, Zarit SH, Greene R. Longitudinal patterns of risk for depression in dementia caregivers: objective and subjective primary stress as predictors. Psychol Aging 1999;14(1):34–43.

Roopalekha J, Latha KS, Bhandary PV Burden and coping in informal caregivers of persons with dementia: a cross sectional study. Online J Health Allied Sci 2010; 9(4):1–6.

Bruvik FK, Ulstein ID, Ranhoff AH, Engedal K. The quality of life of people with dementia and their family carers. Dement Geriatr Cogn. 2012;34(1):7–14.

Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient caregivers: a review of the literature. J Am Acad Nurse Pract 2008;20(8):423–428.

Bosanquet N. Socioeconomic impact of Alzheimer’s disease. Int J Geriatr Psych. 2001;16(3):249–253.

Durda M. Organizacja opieki nad osobami z demencją w Polsce na tle krajów rozwiniętych i rozwijających się. (Organization of care for people with dementia in Poland in the context of developed and developing countries). Gerontol Pol. 2010;18(2):76–85.

Krawczyk‑Wasielewska A, Malak R, Mojs E, Samborski W, Millan‑Calenti JC, Maseda A, Gregersen R, Maibom K. Recommendations of the Alzheimer's Disease International concerning the care of patients with dementia and the situation in Poland. Eur Sci J. 2014;Spec. Ed. Vol. 3: 166–169.

Chambers M, Connor S. Technology as an aid to coping with caring: a usability evaluation of a telematics intervention. Stud Health Technol Inform. 2001;84(2):1130–1134.

Cristancho‑Lacroix V, Wrobel J, Cantegreil‑Kallen I, Dub T, Rouquette A, Rigaud AS. A web‑based psychoeducational program for informal caregivers of patients with Alzheimer’s disease: a pilot randomized controlled trial. J Med Internet Res. 2015 May 12;17(5):117.

Hattink B, Meiland F, van der Roest H, Kevern P, Abiuso F, Bengtsson J, Giuliano A, Duca A, Sanders J, Basnett F, Nugent C, Kingston P, Dröes RM. Web‑based STAR e‑learning course increases empathy and understanding in dementia caregivers: results from a randomized controlled trial in the Netherlands and the United Kingdom. J Med Internet Res. 2015;17(10).

Vainkangar JA, Chong SA. Care participation and burden among informal caregivers of older adults with care needs and associations with dementia. Int Psychogeriatr. 2015;19:1–11.

Kernisan LP, Sudore RL, Knight SJ. Information‑seeking at a caregiving website: a qualitative analysis. J Med Internet Res. 2010;12(3).

Hughes ML, Lowe DA, Shine HE, Carpenter BD, Balsis S. Using the Alzheimer's Association web site to improve knowledge of Alzheimer's disease in health care providers. Am J Alzheimers Dis Other Demen. 2015;30(1): 98–100.

Boyd K, Nugent C, Donnelly M, Bond R, Sterritt R, Hartin P. An investigation into the usability of the STAR training and re‑skilling website for carers of persons withdementia. Conf Proc IEEE Eng Med Biol Soc. 2014;4139–42.

Dillon WA, Prorok JC, Seitz DP. Content and quality of information provided on canadian dementia websites. Can Geriatr J. 2013;16(1):6–15.

Stucki RA, Urwyler P, Rampa L, Müri R, Mosimann UP, Nef T. A web‑based non‑intrusive ambient system to measure and classify activities of daily living. J Med Internet Res. 2014;16(7):175.


Refbacks

  • There are currently no refbacks.


Copyright (c) 2016 Journal of Medical Science

Copyright 2018 by Journal of Medical Sciences