Kunnskapsbasert sykepleie ved frontotemporal demens: En scoping review

Hege Rasmussen Eid

doi:10.7557/14.6979

Forfattere

Hege Rasmussen Eid Nord Universitet https://orcid.org/0000-0001-8636-8487

DOI:

https://doi.org/10.7557/14.6979

Nøgleord:

Sykepleie, Behandlingsanbefalinger, Frontotemporal demens

Resumé

Bakgrunn: Frontotemporal demens (FTD) rammer ofte yngre personer og har et komplekst symptombilde. Sykepleie for pasienter med FTD er utfordrende, likevel foreligger det lite erfaringsbasert og forskningsbasert kunnskap om dette. Hensikt: Å undersøke hva internasjonal forskningsbasert kunnskap, nasjonale retningslinjer og faglige råd sier om sykepleie for pasienter med FTD. Metode: Scoping review. Resultat: 19 artikler ble inkludert. Internasjonal forskningslitteratur viser at samarbeid med pårørende, kompetanse hos sykepleiere, individualisert tilpassede omgivelser og aktiviteter samt behandlingsintervensjoner bør inngå i sykepleie til pasienter med FTD. Nasjonale retningslinjer og faglige råd sier ikke noe om sykepleie til pasienter med FTD. Konklusjon: Kompleksiteten ved FTD gir andre føringer for sykepleie enn ved andre demenssykdommer. Nasjonale retningslinjer ved demens generelt rommer noe av anbefalingene som finnes i forskningslitteraturen, men mye tyder på at det kan være behov for mer diagnosespesifikke retningslinjer ved FTD. Dette bør undersøkes nærmere i fremtidige studier.

Metrik

Metrik indlæses ...

Forfatterbiografi

Hege Rasmussen Eid, Nord Universitet

Førsteamanuensis, Fakultet for sykepleie og helsevitenskap

Referencer

Aldring og helse. (2023). Personsentrert omsorg. https://www.aldringoghelse.no/demens/behandling-og-oppfolging/personsentrert-omsorg/

Baborie, A., Griffiths, T. D., Jaros, E., Momeni, P., McKeith, I. G., Burn, D. J., Keir, G., Larner, A. J., Mann, D. M., & Perry, R. (2012). Frontotemporal Dementia in Elderly Individuals. Archives of Neurology, 69(8), 1052-1060. https://doi.org/10.1001/archneurol.2011.3323

Baird, A., Gelding, R., Brancatisano, O., & Thompson, W. F. (2020). A Preliminary Exploration of the Stability of Music- and Photo-Evoked Autobiographical Memories in People with Alzheimer’s and Behavioral Variant Frontotemporal Dementia. Music & Science, 3, 2059204320957273. https://doi.org/10.1177/2059204320957273

Bang, J., Spina, S., & Miller, B. L. (2015). Frontotemporal dementia. Lancet, 386(10004), 1672-1682. https://doi.org/10.1016/s0140-6736(15)00461-4

Berwig, M., Dinand, C., Becker, U., & Halek, M. (2020). Application of Marte Meo® counselling with people with behavioural variant frontotemporal dementia and their primary carers (AMEO-FTD) - a non-randomized mixed-method feasibility study. Pilot Feasibility Stud, 6, 32. https://doi.org/10.1186/s40814-020-0551-1

Bott, N. T., Radke, A., Stephens, M. L., & Kramer, J. H. (2014). Frontotemporal dementia: diagnosis, deficits and management. Neurodegener Dis Manag, 4(6), 439-454. https://doi.org/10.2217/nmt.14.34

Brekkhus-Wetterberg, P., Brækhus,A. (2020). Primær Progressiv Afasi (PPA). Afasiposten, (1). https://afasi.no/2020/04/27/primaer-progressiv-afasi-ppa/

Clare, L., Teale, J. C., Toms, G., Kudlicka, A., Evans, I., Abrahams, S., Goldstein, L. H., Hindle, J. V., Ho, A. K., Jahanshahi, M., Langdon, D., Morris, R., Snowden, J. S., Davies, R., Markova, I., Busse, M., & Thompson-Coon, J. (2018). Cognitive rehabilitation, self-management, psychotherapeutic and caregiver support interventions in progressive neurodegenerative conditions: A scoping review. NeuroRehabilitation, 43(4), 443-471. https://doi.org/10.3233/nre-172353

de Simone, V., Kaplan, L., Patronas, N., Wassermann, E. M., & Grafman, J. (2007). Driving Abilities in Frontotemporal Dementia Patients. Dementia and Geriatric Cognitive Disorders, 23(1), 1-7. https://doi.org/10.1159/000096317

Diehl-Schmid, J., Last, D., Schuster, T., Förstl, H., Schneider-Schelte, H., & Kurz, A. (2012). Health care utilization in frontotemporal lobar degeneration. Alzheimer Dis Assoc Disord, 26(2), 166-170. https://doi.org/10.1097/WAD.0b013e3182263edc

Edberg, A. K., & Edfors, E. (2008). Nursing care for people with frontal-lobe dementia – difficulties and possibilities. International Psychogeriatrics, 20(2), 361-374. https://doi.org/10.1017/S1041610207005595

Einang Alnes, R., Kirkevold, M., & Skovdahl, K. (2011). Insights gained through Marte Meo counselling: experiences of nurses in dementia specific care units. International journal of older people nursing, 6(2), 123-132. https://doi.org/10.1111/j.1748-3743.2010.00229.x

Fonseca, L., & Machado, Á. (2014). Suicidal behaviour in frontotemporal dementia patients--a retrospective study. Int J Geriatr Psychiatry, 29(2), 217-218. https://doi.org/10.1002/gps.4000

Gambogi, L. B., Guimarães, H. C., de Souza, L. C., & Caramelli, P. (2021). Treatment of the behavioral variant of frontotemporal dementia: a narrative review. Dementia & neuropsychologia, 15(3), 331-338. https://doi.org/10.1590/1980-57642021dn15-030004

Gausdal, M. (2012). ONE SIZE passer ikke alle! Behov for skreddersydde tilbud til yngre personer med demens og pårørende. Aldring og Helse. https://butikk.aldringoghelse.no/demens/one-size-passer-ikke-alle

Ghosh, S., & Lippa, C. F. (2015). Clinical Subtypes of Frontotemporal Dementia. Am J Alzheimers Dis Other Demen, 30(7), 653-661. https://doi.org/10.1177/1533317513494442

Gjøra, L., Kjelvik, G., Strand, B. H., Kvello-Alme, A., & Selbæl, G. (2020). Forekomst av demens i Norge. https://butikk.aldringoghelse.no/file/sync-files/rapport-forekomst-av-demens-a4_2020_web.pdf

Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today, 24(2), 105-112. https://doi.org/10.1016/j.nedt.2003.10.001

Hall, G. R., Shapira, J., Gallagher, M., & Denny, S. S. (2013). Managing differences: care of the person with frontotemporal degeneration. J Gerontol Nurs, 39(3), 10-14. https://doi.org/10.3928/00989134-20130131-02

Helse og omsorgsdepartementet. (2015). Demensplan 2020. https://www.regjeringen.no/no/dokumenter/demensplan-2020/id2465117/

Helse og omsorgsdepartementet. (2020). Demensplan 2025. https://www.regjeringen.no/no/dokumenter/demensplan-2025/id2788070/

Helsedirektoratet. (2017). Demens. Nasjonal faglig retningslinje. Helsedirektoratet. https://www.helsedirektoratet.no/retningslinjer/demens

Hodges, J. R., & Piguet, O. (2018). Progress and Challenges in Frontotemporal Dementia Research: A 20-Year Review. J Alzheimers Dis, 62(3), 1467-1480. https://doi.org/10.3233/jad-171087

Johannessen, A., Helvik, A. S., Engedal, K., & Thorsen, K. (2017). Experiences and needs of spouses of persons with young-onset frontotemporal lobe dementia during the progression of the disease. Scand J Caring Sci, 31(4), 779-788. https://doi.org/10.1111/scs.12397

Kitwood, T. (1997). Dementia reconsidered. The person comes first. Open university press.

Klug, J. R. (2014). Spotlight on frontotemporal dementia. Nursing2022, 44(8). https://journals.lww.com/nursing/Fulltext/2014/08000/Spotlight_on_frontotemporal_dementia.18.aspx

Kortte, K. B., & Rogalski, E. J. (2013). Behavioural interventions for enhancing life participation in behavioural variant frontotemporal dementia and primary progressive aphasia. International review of psychiatry (Abingdon, England), 25(2), 237-245. https://doi.org/10.3109/09540261.2012.751017

Kraus, M. (2001). Ikke-medikamentell behandling av frontotemporal demens. In R. M. E. Krüger (Ed.), Demens. Frontotemporal demens: hva koster et øyeblikk? (pp. 11-13). Nasjonalt kompetansesenter for aldersdemens.

Kristoffersen, N. J., Nortvedt,F.,Skaug,E-A.,. (2005). Grunnleggende sykepleie. Sykepleiens grunnlag, rolle og ansvar. Gyldendal Norsk Forlag AS.

Kurz, A., Kurz, C., Ellis, K., & Lautenschlager, N. T. (2014). What is frontotemporal dementia? Maturitas, 79(2), 216-219. https://doi.org/10.1016/j.maturitas.2014.07.001

Langhammer, B., Sagbakken, M., Kvaal, K., Ulstein, I., Nåden, D., & Rognstad, M. K. (2019). Music Therapy and Physical Activity to Ease Anxiety, Restlessness, Irritability, and Aggression in Individuals With Dementia With Signs of Frontotemporal Lobe Degeneration. J Psychosoc Nurs Ment Health Serv, 57(5), 29-37. https://doi.org/10.3928/02793695-20190124-02

Lee, S. E. (2023a). Fronototemporal dementia: Treatment. In Ted.W.Post (Ed.). UpToDate. https://www.uptodate.com/contents/frontotemporal-dementia-treatment

Lee, S. E. (2023b). Frontotemporal dementia: Clinical features and diagnosis. In Ted.W.Post (Ed.). UpToDate. https://www.uptodate.com/contents/frontotemporal-dementia-clinical-features-and-diagnosis?

Lichtwarck, B., Myhre, J., Goyal, A. R., Rokstad, A. M. M., Selbaek, G., Kirkevold, Ø., & Bergh, S. (2019). Experiences of nursing home staff using the targeted interdisciplinary model for evaluation and treatment of neuropsychiatric symptoms (TIME) - a qualitative study. Aging Ment Health, 23(8), 966-975. https://doi.org/10.1080/13607863.2018.1464116

Magrath Guimet, N., Zapata-Restrepo, L. M., & Miller, B. L. (2022). Advances in Treatment of Frontotemporal Dementia. J Neuropsychiatry Clin Neurosci, 34(4), 316-327. https://doi.org/10.1176/appi.neuropsych.21060166

Manoochehri, M., & Huey, E. D. (2012). Diagnosis and management of behavioral issues in frontotemporal dementia. Curr Neurol Neurosci Rep, 12(5), 528-536. https://doi.org/10.1007/s11910-012-0302-7

Mendez, M. F. (2009). Frontotemporal dementia: therapeutic interventions. Front Neurol Neurosci, 24, 168-178. https://doi.org/10.1159/000197896

Mendez, M. F., & Shapira, J. S. (2005). Loss of insight and functional neuroimaging in frontotemporal dementia. J Neuropsychiatry Clin Neurosci, 17(3), 413-416. https://doi.org/10.1176/jnp.17.3.413

Merrilees, J. J., & Miller, B. L. (2003). Long-term care of patients with frontotemporal dementia. J Am Med Dir Assoc, 4(6 Suppl), S162-164. https://doi.org/10.1097/01.Jam.0000095366.91533.22

Mioshi, E., Bristow, M., Cook, R., & Hodges, J. R. (2009). Factors underlying caregiver stress in frontotemporal dementia and Alzheimer's disease. Dement Geriatr Cogn Disord, 27(1), 76-81. https://doi.org/10.1159/000193626

Morhardt, D. (2011). Accessing community-based and long-term care services: challenges facing persons with frontotemporal dementia and their families. J Mol Neurosci, 45(3), 737-741. https://doi.org/10.1007/s12031-011-96125

Mourik, J. C., Rosso, S. M., Niermeijer, M. F., Duivenvoorden, H. J., Van Swieten, J. C., & Tibben, A. (2004). Frontotemporal dementia: behavioral symptoms and caregiver distress. Dement Geriatr Cogn Disord, 18(3-4), 299-306. https://doi.org/10.1159/000080123

Mulkey, M. A., Everhart, D. E., & Hardin, S. R. (2019). Fronto-temporal dementia: a case study and strategies and support for caregivers. Br J Community Nurs, 24(11), 544-549. https://doi.org/10.12968/bjcn.2019.24.11.544

Neary, D., Snowden, J., & Mann, D. (2005). Frontotemporal dementia. Lancet Neurol, 4(11), 771-780. https://doi.org/10.1016/s1474-4422(05)70223-4

Yrkesetiske retningslinjer for sykepleiere, (2023). https://www.nsf.no/etikk-0/yrkesetiske-retningslinjer-sykepleiere

O'Connor, C. M., Clemson, L., Brodaty, H., Gitlin, L. N., Piguet, O., & Mioshi, E. (2016). Enhancing caregivers' understanding of dementia and tailoring activities in frontotemporal dementia: two case studies. Disabil Rehabil, 38(7), 704-714. https://doi.org/10.3109/09638288.2015.1055375

O'Connor, C. M., Clemson, L., Brodaty, H., Low, L. F., Jeon, Y. H., Gitlin, L. N., Piguet, O., & Mioshi, E. (2019). The tailored activity program (TAP) to address behavioral disturbances in frontotemporal dementia: a feasibility and pilot study. Disabil Rehabil, 41(3), 299-310. https://doi.org/10.1080/09638288.2017.1387614

O'Connor, C. M. C., Mioshi, E., Kaizik, C., Fisher, A., Hornberger, M., & Piguet, O. (2021). Positive behaviour support in frontotemporal dementia: A pilot study. Neuropsychol Rehabil, 31(4), 507-530. https://doi.org/10.1080/09602011.2019.1707099

Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., . . . Moher, D. (2021). The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. Bmj, 372, n71. https://doi.org/10.1136/bmj.n71

Peters, M. D. J., Godfrey C.,McInerney,P.,Munn,Z.,Tricco,A.C,Khali,H.,. (2020). Chapter 11: Scoping reviews. JBI. https://synthesismanual.jbi.global/

Pfeiffer, R. (2002). Sykepleier og leder: Den administrative og den faglige sykepleierens funksjon. Fagbokforlaget.

Pressman, P. S., & Miller, B. L. (2014). Diagnosis and management of behavioral variant frontotemporal dementia. Biol Psychiatry, 75(7), 574-581. https://doi.org/10.1016/j.biopsych.2013.11.006

Rasmussen, H., & Hellzen, O. (2013). The meaning of long-term caregiving for patients with frontal lobe dementia. International journal of qualitative studies on health and well-being, 8, 19860. https://doi.org/10.3402/qhw.v8i0.19860

Rasmussen, H., Hellzen, O., Stordal, E., & Enmarker, I. (2019). Family caregivers experiences of the pre-diagnostic stage in frontotemporal dementia. Geriatr Nurs, 40(3), 246-251. https://doi.org/10.1016/j.gerinurse.2018.10.006

Riedl, L., Mackenzie, I. R., Forstl, H., Kurz, A., & Diehl-Schmid, J. (2014). Frontotemporal lobar degeneration: current perspectives. Neuropsychiatr Dis Treat, 10, 297-310. https://doi.org/10.2147/ndt.S38706

Rognstad, M.-K., Nåden, D., Ulstein, I., Kvaal, K., Langhammer, B., & Sagbakken, M. (2020). Behavioural disturbances in patients with frontotemporal lobe degeneration focusing on caregiver burden at home and in nursing homes. Journal of Clinical Nursing, 29(9-10), 1733-1743. https://doi.org/https://doi.org/10.1111/jocn.15208

Rosness, T. A., Engedal, K., & Chemali, Z. (2016). Frontotemporal Dementia: An Updated Clinician's Guide. J Geriatr Psychiatry Neurol, 29(5), 271-280. https://doi.org/10.1177/0891988716654986

Rosness, T. A., Haugen, P. K., & Engedal, K. (2008). Support to family carers of patients with frontotemporal dementia. Aging Ment Health, 12(4), 462-466. https://doi.org/10.1080/13607860802224334

Sagbakken, M., Nåden, D., Ulstein, I., Kvaal, K., Langhammer, B., & Rognstad, M.-K. (2017). Dignity in people with frontotemporal dementia and similar disorders — a qualitative study of the perspective of family caregivers. BMC Health Services Research, 17(1), 432. https://doi.org/10.1186/s12913-017-2378-x

Savage, S. A., Piguet, O., & Hodges, J. R. (2014). Giving words new life: generalization of word retraining outcomes in semantic dementia. J Alzheimers Dis, 40(2), 309-317. https://doi.org/10.3233/jad-131826

Shinagawa, S., Nakajima, S., Plitman, E., Graff-Guerrero, A., Mimura, M., Nakayama, K., & Miller, B. L. (2015). Non-pharmacological management for patients with frontotemporal dementia: a systematic review. J Alzheimers Dis, 45(1), 283-293. https://doi.org/10.3233/jad-142109

Tsai, R. M., & Boxer, A. L. (2016). Therapy and clinical trials in frontotemporal dementia: past, present, and future. J Neurochem, 138 Suppl 1(Suppl 1), 211-221. https://doi.org/10.1111/jnc.13640

Yeaworth, R. C., & Burke, W. J. (2000). Frontotemporal dementia: a different kind of dementia. Arch Psychiatr Nurs, 14(5), 249-253. https://doi.org/10.1053/apnu.2000.9816

Zucca, M., Rubino, E., Vacca, A., Govone, F., Gai, A., De Martino, P., Boschi, S., Gentile, S., Giordana, M. T., & Rainero, I. (2018). High Risk of Suicide in Behavioral Variant Frontotemporal Dementia. American Journal of Alzheimer's Disease & Other Dementias®, 34(4), 265-271. https://doi.org/10.1177/1533317518817609