Contenuto dell'articolo principale
Abstract
OBIETTIVI: analizzare i motivi, familiari e personali, che hanno condotto il caregiver informale di una persona affetta da demenza cognitiva alla scelta dell’istituzionalizzazione, l’impatto di questa decisione sul carer stesso e l’utilità di eventuali interventi di supporto professionale durante questa fase delicata.
BACKGROUND: L’aumento dell’aspettativa di vita sta determinando una rapida crescita numerica della popolazione anziana, con associato aumento della prevalenza di malattie croniche e neurodegenerative come la demenza. Il declino delle funzioni cognitive e l’inevitabile impatto della demenza sulla qualità di vita determinano effetti gravosi anche sulla famiglia e sul caregiver informale con conseguente necessità di istituzionalizzazione nelle residenze sanitarie assistenziali (RSA).
METODO: l’indagine è stata condotta in quattro RSA della media valle Camonica (BS), sono stati intervistati 25 caregiver che rispondevano ai criteri d’inclusione nello studio. È stata implementata una ricerca qualitativa, come strumento è stata utilizzata un’intervista semi strutturata.
RISULTATI: Tra le principali cause di tale decisione sono emersi il peggioramento del deficit cognitivo, la comparsa di disturbi comportamentali della persona affetta da demenza e conseguenti elevati livelli di stress psicologico a carico del caregiver oltre all’impatto rilevante della malattia sulla qualità della vita per il nucleo familiare e nel contesto sociale. L’esistenza di interventi professionali di supporto al caregiver risulta essere poco conosciuta tra i partecipanti allo studio e quindi scarsamente rilevante sul benessere sia dell’assistente informale che della persona affetta da demenza.
CONCLUSIONI: È importante che gli operatori sanitari forniscano un supporto sia pratico che psicologico ai caregiver sia durante l’assistenza domiciliare che nella transizione verso le cure istituzionali. Questo dovrebbe essere erogato da molteplici figure professionali che lavorano in equipe per una valutazione multidisciplinare.
PAROLE CHIAVE: Demenza, Caregiver, Istituzionalizzazione.
Parole chiave
Dettagli dell'articolo
Riferimenti
- A. Padovani, B. Borroni, M. S. Cotelli (2017), “Neurologia per le professioni sanitarie”. Piccin, Nuova Libraria (PD), pag. 50
- Alzheimer’s Disease International (2015), “L’impatto globale della demenza”, World Alzheimer Report
- Alzheimer’s Association (2019), “Alzheimer’s Disease Facts and Figures”, Alzheimers Dement;15(3):321-87
- Preeti Sinha, MD, Sherin Yohannan, MPhil, A. Thirumoorthy, PhD2, Palanimothu Thangaraju Sivakumar (2017), “Predictors of desire to institutionalization in dementia caregivers from a developing country”, American Journal of Alzheimer’s Disease and Other Dementias, Vol.32 (5), 245-251, PubMed
- Astrid Stephan, Basema Afram, Jaana Koskenniemi, Hilde Verbeek, Maria E. Soto, Michel H.C. Bleijlevens, Caroline Sutcliffe, Connie Lethin, Ester Risco, Kai Saks, Jan P.H. Hamers, Gabriele Mayer & on behalf of the RightTimePlaceCare Consortium (2014), “Older persons with dementia at risk for institutionalization in eight european countries: a cross selectional study of the perceptions of informal caregivers and healthcare professional”, Journal of Advanced Nursing 71(6), 1392-1404, PubMed
- Elo, S. & Kyngas, H. (2008), The qualitative content analysis process, Journal of Advanced Nursing. 62(1), 107–115 doi: 10.1111/j.1365-2648.2007.04569.
- Censis e AIMA (2016), “L’impatto economico e sociale della malattia di Alzheimer”
- K. Crawford, R. Digby, M. Bloomer, H. Tan and A. Williams (2015) “Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia”, Aging & Mental Health, Vol.19, No. 8, 739-746, PubMed
- Lisa Pau Le Low, Lai Wah Lam e Kim Pong Fan (2017), “Decision-making experiences of family members of older adults with moderate dementia towards community and residential care home services: a grounded theory study protocol”, BMC Geriatrics, 17:120,
- Sandeep Toot, Tom Swinson, Mike Devine, David Challis e Martin Orrell (2016), “Causes of nursing home placement for older people with dementia: a systematic review and meta-analysis”, International Psychogeriatrics 29:2, 195-208, PubMed
- M.Kiwi, Lars-Christer Hydén, Eleonor Antelius (2017), “Deciding upon transition to residential care for persons living with dementia: why do iranian family caregivers living in sweden cease careving at home?”, Journal of Cross Cultural Gerontology, 33:21-42,
- Christian Muller, Sindy Lautenschlager, Gabriele Meyer, Astrid Stephan (2017). “Interventions to support people with dementia and their caregivers during the transition from home care to nursing home care: a systematic review”, International Journal of Nursing Studies 71, 139-152,
- Luisa Colucci, Ivana Molino, Francesco Amenta, Giuseppe Lucio Gaeta (2017), “Desire to institutionalize in Alzheimer’s caregivers: an empirical analysis on italian data”, Archives of Gerontology e Geriatrics 75, 165-170,
- Anne M. Koivisto, Ilona Hallikainen, Tarja Välimäki, Kristiina Hongisto, Asta Hiltunen, Pertti Karppi, Juhani Sivenius, Hilkka Soininen, and Janne Martikainen (2015), “Early psychosocial intervention does not delay institutionalization in persons with mild Alzheimer disease and has impact on neither disease progression nor caregivers’ well-being: ALSOVA 3-year follow-up”, International Journal of Geriatric Psychiatry; 31: 273–283,
- Claire Dickinson, Johanne Dow, Grant Gibson, Louise Hayes, Shannon Robalino e Louise Robinson (2017), “Psychosocial intervention for carers of people with dementia: what components are most effective and when? A systematic review of systematic reviews”, International Psychogeriatrics, 29:1, 31-43
Riferimenti
A. Padovani, B. Borroni, M. S. Cotelli (2017), “Neurologia per le professioni sanitarie”. Piccin, Nuova Libraria (PD), pag. 50
Alzheimer’s Disease International (2015), “L’impatto globale della demenza”, World Alzheimer Report
Alzheimer’s Association (2019), “Alzheimer’s Disease Facts and Figures”, Alzheimers Dement;15(3):321-87
Preeti Sinha, MD, Sherin Yohannan, MPhil, A. Thirumoorthy, PhD2, Palanimothu Thangaraju Sivakumar (2017), “Predictors of desire to institutionalization in dementia caregivers from a developing country”, American Journal of Alzheimer’s Disease and Other Dementias, Vol.32 (5), 245-251, PubMed
Astrid Stephan, Basema Afram, Jaana Koskenniemi, Hilde Verbeek, Maria E. Soto, Michel H.C. Bleijlevens, Caroline Sutcliffe, Connie Lethin, Ester Risco, Kai Saks, Jan P.H. Hamers, Gabriele Mayer & on behalf of the RightTimePlaceCare Consortium (2014), “Older persons with dementia at risk for institutionalization in eight european countries: a cross selectional study of the perceptions of informal caregivers and healthcare professional”, Journal of Advanced Nursing 71(6), 1392-1404, PubMed
Elo, S. & Kyngas, H. (2008), The qualitative content analysis process, Journal of Advanced Nursing. 62(1), 107–115 doi: 10.1111/j.1365-2648.2007.04569.
Censis e AIMA (2016), “L’impatto economico e sociale della malattia di Alzheimer”
K. Crawford, R. Digby, M. Bloomer, H. Tan and A. Williams (2015) “Transitioning from caregiver to visitor in a long-term care facility: the experience of caregivers of people with dementia”, Aging & Mental Health, Vol.19, No. 8, 739-746, PubMed
Lisa Pau Le Low, Lai Wah Lam e Kim Pong Fan (2017), “Decision-making experiences of family members of older adults with moderate dementia towards community and residential care home services: a grounded theory study protocol”, BMC Geriatrics, 17:120,
Sandeep Toot, Tom Swinson, Mike Devine, David Challis e Martin Orrell (2016), “Causes of nursing home placement for older people with dementia: a systematic review and meta-analysis”, International Psychogeriatrics 29:2, 195-208, PubMed
M.Kiwi, Lars-Christer Hydén, Eleonor Antelius (2017), “Deciding upon transition to residential care for persons living with dementia: why do iranian family caregivers living in sweden cease careving at home?”, Journal of Cross Cultural Gerontology, 33:21-42,
Christian Muller, Sindy Lautenschlager, Gabriele Meyer, Astrid Stephan (2017). “Interventions to support people with dementia and their caregivers during the transition from home care to nursing home care: a systematic review”, International Journal of Nursing Studies 71, 139-152,
Luisa Colucci, Ivana Molino, Francesco Amenta, Giuseppe Lucio Gaeta (2017), “Desire to institutionalize in Alzheimer’s caregivers: an empirical analysis on italian data”, Archives of Gerontology e Geriatrics 75, 165-170,
Anne M. Koivisto, Ilona Hallikainen, Tarja Välimäki, Kristiina Hongisto, Asta Hiltunen, Pertti Karppi, Juhani Sivenius, Hilkka Soininen, and Janne Martikainen (2015), “Early psychosocial intervention does not delay institutionalization in persons with mild Alzheimer disease and has impact on neither disease progression nor caregivers’ well-being: ALSOVA 3-year follow-up”, International Journal of Geriatric Psychiatry; 31: 273–283,
Claire Dickinson, Johanne Dow, Grant Gibson, Louise Hayes, Shannon Robalino e Louise Robinson (2017), “Psychosocial intervention for carers of people with dementia: what components are most effective and when? A systematic review of systematic reviews”, International Psychogeriatrics, 29:1, 31-43