Skip to main content
×
×
Home

Regional dementia care networks in Germany: changes in caregiver burden at one-year follow-up and associated factors

  • Franziska Laporte Uribe (a1), Johannes Gräske (a2) (a3), Susann Grill (a4), Steffen Heinrich (a1), Susanne Schäfer-Walkmann (a5), Jochen René Thyrian (a6) and Bernhard Holle (a1)...
Abstract
Background:

Recently, regional dementia care networks (DCNs) have been established in Germany to provide timely support for persons with dementia (PwDs) and their families. There is a lack of research in this setting. This study was conducted to describe the burden experienced by informal caregivers over the course of one year when utilizing a DCN and the factors affecting potential changes in caregiver burden during that time.

Methods:

The study was part of the DemNet-D project, a multi-center observational study of DCNs in Germany. Standardized questionnaires were administered during face-to-face interviews at baseline and at a one-year follow-up with PwDs and their informal caregivers who used a DCN. Based on qualitative data, four DCN governance types were identified and used in a multivariate analysis of burden categories.

Results:

A total of 389 PwD-informal caregiver dyads completed the follow-up assessment. At follow-up, the dyads reported significantly lower scores for burden in relation to practical care tasks, conflicts of need, and role conflicts. This change was associated with the PwD–caregiver relationship, the caregiver's gender and health status, and the PwD's socio-economic status. The governance structure of the DCNs was associated with change in one of the four burden categories.

Conclusions:

Our data provide the first indications that different governance structures of DCNs seem to be similarly well suited to support network users and might contribute to reducing caregiver burden. However, further studies set in DCNs examining factors that mediate changes in burden are needed to draw strong conclusions regarding the effectiveness of DCNs. Gender differences and the PwD–caregiver relationship should be considered by DCN stakeholders when developing support structures.

Copyright
Corresponding author
Correspondence should be addressed to: Franziska Laporte Uribe, German Center for Neurodegenerative Diseases e. V. (DZNE) site Witten, Postfach 62 50, Stockumer Str. 12, 58453 Witten, Germany. Phone: +49 23 02-926 226; Fax: +49 23 02-926 239. Email: franziska.laporte-uribe@dzne.de.
References
Hide All
Alzheimer's Disease International (2015). World Alzheimer Report 2015: The Global Impact of Dementia. An analysis of prevalence, incidence, cost & trends. Available at: http://www.worldalzreport2015.org/downloads/world-alzheimer-report-2015.pdf; last accessed 2 February 2016.
Brodaty, H. and Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in Clinical Neuroscience, 11, 217228 [Online] Available at: http://www.ncbi.nlm.nih.gov/pubmed/19585957.
Brodaty, H., Green, A. and Koschera, A. (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society, 51, 657664. doi:10.1034/j.1600-0579.2003.00210.x.
Chappell, N. L., Dujela, C. and Smith, A. (2015). Caregiver well-being: intersections of relationship and gender. Research on Aging, 37, 623645. doi:10.1177/0164027514549258.
Clyburn, L. D., Stones, M. J., Hadjistavropoulos, T. and Tuokko, H. (2000). Predicting caregiver burden and depression in Alzheimer's disease. Journals Of Gerontology Series B, 55, S2–13. doi:10.1093/geronb/55.1.S2.
Cohen-Mansfield, J., Marx, M. S. and Werner, P. (1992). Agitation in elderly persons: an integrative report of findings in a nursing home. International Psychogeriatrics, 4, 221240. doi:10.1017/S1041610292001285.
Etters, L., Goodall, D. and Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423428. doi:10.1111/j.1745-7599.2008.00342.x.
Federal Ministry for Family Affairs Senior Citizens Women and Youth and Federal Ministry of Health (2014). Alliance for people with dementia. The fields of action. Available at: http://www.allianz-fuer-demenz.de/fileadmin/de.allianz-fuer-demenz/content.de/downloads/BF1501_001_Allianz-Nationale_Demenzstrategie_EN_RZ.pdf; last accessed 3 November 2015.
Gräske, J. et al. (2016). Regionale demenznetzwerke in deutschland – ergebnisse der demnet-d-studie zur lebensqualität der nutzer/innen. Pflege - Die wissenschaftliche Zeitschrift für Pflegeberufe, 29, 93101. doi:10.1024/1012-5302/a000xxx.
Heinrich, S., Uribe, F. L., Wübbeler, M., Hoffmann, W. and Roes, M. (2016). Knowledge evaluation in dementia care networks: a mixed-methods analysis of knowledge evaluation strategies and the success of informing family caregivers about dementia support services. International Journal of Mental Health Systems, 10, 69. doi:10.1186/s13033-016-0100-8.
Hokema, A. and Sulmann, D. (2009). Vernetzung in der gesundheitlichen und pflegerischen Versorgung: Wem nützt sie? In Böhm, K., Tesch-Römer, C. and Ziese, T. (eds.), Beiträge zur Gesundheitsberichterstattung des Bundes. Gesundheit und Krankheit im Alter. Berlin: Robert Koch Institut, 207215.
Köhler, L. et al. (2014). Does an interdisciplinary network improve dementia care? Results from the IDemUck-study. Current Alzheimer Research, 11, 538548. doi:10.2174/1567205011666140618100727.
Landesinitiative Demenz-Service Nordrhein-Westfalen (2012). Leitfaden für den Aufbau und die Umsetzung von regionalen Demenznetzwerken. Available at: http://www.demenz-service-nrw.de/tl_files/Landesinitiative/Die%20Landesinitiative/Ergebnisse%20der%20Arbeitsgruppen/Netzwerke-Leitfaden_24-5-2012.pdf; last accessed 28 July 2015.
Laporte Uribe, F. et al. (2016). Caregiver burden assessed in dementia care networks in Germany: findings from the DemNet-D study baseline. Aging & Mental Health, 112. doi:10.1080/13607863.2016.1181713.
Lawton, M. P. and Brody, E. M. (1969). Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist, 9, 179186. doi:10.1093/geront/9.3_Part_1.179.
Lemieux-Charles, L. et al. (2005). Evaluating the effectiveness of community-based dementia care networks: the dementia care networks' study. Gerontologist, 45, 456464. doi:10.1093/geront/45.4.456.
Michalowsky, B. et al. (2013). Finanzierungsstrategien regionaler Demenznetzwerke. Paper presented at 3-Länderkonferenz Pflege & Pflegewissenschaft, Konstanz.
Papastavrou, E., Kalokerinou, A., Papacostas, S. S., Tsangari, H. and Sourtzi, P. (2007). Caring for a relative with dementia: family caregiver burden. Journal of Advanced Nursing, 58, 446457. doi:10.1111/j.1365-2648.2007.04250.x.
Pearlin, L. I., Mullan, J. T., Semple, S. J. and Skaff, M. M. (1990). Caregiving and the stress process: an overview of concepts and their measures. Gerontologist, 30, 583594. doi:10.1093/geront/30.5.583.
R Core Team (2014). R: A language and environment for statistical computing. R Foundation for Statistical Computing. Vienna, Austria.
Rabin, R. and de Charro, F. (2001). EQ-5D: a measure of health status from the EuroQol Group. Annals of Medicine, 33, 337343. doi:10.3109/07853890109002087.
Reuther, S., Dichter, M. N., Bartholomeyczik, S., Nordheim, J. and Halek, M. (2016). Construct validity and internal consistency of the neuropsychiatric inventory – nursing home (NPI-NH) in German nursing homes. International Psychogeriatrics, FirstView, 111. doi:10.1017/S1041610215002343.
Schäfer-Walkmann, S. et al. (2013a). Local dementia care networks in Germany – types and governance structures. Paper presented at the 66th Annual Scientific Meeting “Optimal Aging Through Research”. Gerontologist, 53, S31. doi:10.1093/geront/gnt151.
Schäfer-Walkmann, S., Traub, F. and Peitz, A. (2013b). DemNet-D Netzwerkportfolios. unpublished.
Schäfer-Walkmann, S., Traub, F., Peitz, A., Holle, B., Thyrian, J. R. and Wolf-Osterman, K. (2014). Local dementia care networks in Germany. Types and governace structures. Paper presented at 24th Alzheimer Europe Conference: “Autonomy and dignity in dementia”, Glasgow, Scotland. Available at: http://www.alzheimer-europe.org/Conferences/Previous-conferences/2014-Glasgow/Detailed-Programme-abstracts-and-presentations/PO151-PO200; 27 September 2016.
Schäfer-Walkmann, S., Traub, F., Peitz, A., Holle, B., Thyrian, J. R. and Wolf-Osterman, K. (2015). Local dementia care networks in Germany. Types and governace structures. Paper presented at Abschlussveranstaltung der Zukunftswerkstatt Demenz des BMG, Berlin, Germany
Schulz, R. and Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108, 2327; quiz 27. doi:10.1097/01.NAJ.0000336406.45248.4c.
Sharma, N., Chakrabarti, S. and Grover, S. (2016). Gender differences in caregiving among family – caregivers of people with mental illnesses. World Journal of Psychiatry, 6, 717. doi:10.5498/wjp.v6.i1.7.
Statistisches Bundesamt (2015). Pflegestatistik 2013 - Pflege im Rahmen der Pflegeversicherung. Deutschlandergebnisse. Wiesbaden, Germany: Statistisches Bundesamt.
Thyrian, J. R. et al. (2016). Relatives' burden of caring for people screened positive for dementia in primary care: results of the DelpHi study. Zeitschrift für Gerontologie und Geriatrie. doi:10.1007/s00391-016-1119-9.
van der Lee, J., Bakker, T. J. E. M., Duivenvoorden, H. J. and Dröes, R.-M. (2014). Multivariate models of subjective caregiver burden in dementia: a systematic review. Ageing Research Reviews, 15, 7693. doi:10.1016/j.arr.2014.03.003.
Wennberg, A., Dye, C., Streetman-Loy, B. and Pham, H. (2015). Alzheimer's patient familial caregivers: a review of burden and interventions. Health & Social Work, 40, e162e169. doi:10.1093/hsw/hlv062.
Winkler, J. and Stolzenberg, H. (1999). Weitere themen-der sozialschichtindex im bundes-gesundheitssurvey. Gesundheitswesen, 61, S178 [Online] Available from:.
Wolfs, C. A. et al. (2012). Predictive factors for the objective burden of informal care in people with dementia: a systematic review. Alzheimer Disease and Associated Disorders, 26, 197204. doi:10.1097/WAD.0b013e31823a6108.
World Health Organization and Alzheimer's Disease International (2012). Dementia: a public health priority. Available at: http://apps.who.int/iris/bitstream/10665/75263/1/9789241564458_eng.pdf.
World Health Organization (2008). Integrated health services – what and why? Available at: http://www.who.int/healthsystems/service_delivery_techbrief1.pdf; last accessed 28 July 2015.
Wübbeler, M. et al. (2015). Nonpharmacological therapies and provision of aids in outpatient dementia networks in Germany: utilization rates and associated factors. Journal of Multidisciplinary Healthcare, 8, 229236. doi:10.2147/jmdh.s80560.
Wübbeler, M. et al. (2016). How do people with dementia utilise primary care physicians and specialists within dementia networks? results of the Dementia Networks in Germany (DemNet-D) study. Health & Social Care in the Community. doi:10.1111/hsc.12315.
Zank, S. and Schacke, C. (2007). Projekt Längsschnittstudie zur Belastung pflegender Angehöriger von demenziell Erkrankten (LEANDER). Abschlussbericht Phase 2: Längsschnittergebnisse der LEANDER Studie. Siegen, Germany: Universität Siegen, Lehrstuhl für Klinische Psychologie.
Zank, S., Schacke, C. and Leipold, B. (2006). Berliner inventar zur angehörigenbelastung – demenz (BIZA-D). Zeitschrift für Klinische Psychologie und Psychotherapie, 35, 296305. doi:10.1026/1616-3443.35.4.296.
Zarit, S. H. (2012). Positive aspects of caregiving: more than looking on the bright side. Aging & Mental Health, 16, 673674. doi:10.1080/13607863.2012.692768.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

International Psychogeriatrics
  • ISSN: 1041-6102
  • EISSN: 1741-203X
  • URL: /core/journals/international-psychogeriatrics
Please enter your name
Please enter a valid email address
Who would you like to send this to? *
×

Keywords

Metrics

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed