El-Hayek YH, Wiley RE, Khoury CP, Daya RP, Ballard C, Evans AR, et al. Tip of the iceberg: assessing the global socioeconomic costs of Alzheimer's disease and related dementias and strategic implications for stakeholders. J Alzheimers Dis. 2019;70(2):323–41.
Gitlin LN, Kales HC, Lyketsos CG. Nonpharmacologic management of behavioral symptoms in dementia. JAMA. 2012;308(19):2020–9.
Houttekier D, Vandervoort A, Van den Block L, van der Steen JT, Vander Stichele R, Deliens L. Hospitalizations of nursing home residents with dementia in the last month of life: results from a nationwide survey. Palliat Med. 2014;28(9):1110–7.
Afram B, Stephan A, Verbeek H, Bleijlevens MH, Suhonen R, Sutcliffe C, et al. Reasons for institutionalization of people with dementia: informal caregiver reports from 8 European countries. J Am Med Dir Assoc. 2014;15(2):108–16.
Vossius C, Selbæk G, Ydstebø A, Benth J, Godager G, Lurås H, et al. Ressursbruk Og Sykdomsforløp Ved Demens (REDIC) [Resource use and disease course in dementia (REDIC)]. Ottestad: Alderspsykiatrisk forskningssenter Sykehuset Innlandet HF; 2015.
Ydstebo AE, Benth JS, Bergh S, Selbaek G, Vossius C. Informal and formal care among persons with dementia immediately before nursing home admission. BMC Geriatr. 2020;20(1):296.
Metzelthin SF, Verbakel E, Veenstra MY, Van Exel J, Ambergen AW, Kempen GI. Positive and negative outcomes of informal caregiving at home and in institutionalised long-term care: a cross-sectional study. BMC Geriatr. 2017;17(1):1–10.
Vossius C, Selbæk G, Šaltytė Benth J, Wimo A, Bergh SJIjogp. The use of direct care in nursing home residents: a longitudinal cohort study over 3 years. Int J Geriatric Psychiatry. 2018; 34(2):337–51.
Røen I, Selbæk G, Kirkevold Ø, Engedal K, Testad I, Bergh S. Resourse use and disease Couse in dementia - nursing home (REDIC-NH), a longitudinal cohort study; design and patient characteristics at admission to Norwegian nursing homes. BMC Health Serv Res. 2017;17(1):365.
Hayward JK, Gould C, Palluotto E, Kitson EC, Spector A. Family involvement with care homes following placement of a relative living with dementia: a review. Ageing Soc. 2021:1–46.
Paulus AT, Raak A, Keijzer F. Informal and formal caregivers' involvement in nursing home care activities: impact of integrated care. J Adv Nurs. 2005;49(4):354–66.
Puurveen G, Baumbusch J, Gandhi P. From family involvement to family inclusion in nursing home settings: a critical interpretive synthesis. J Fam Nurs. 2018;24(1):60–85.
Roberts AR, Ishler KJ, Adams KB. The predictors of and motivations for increased family involvement in nursing homes. Gerontologist. 2020;60(3):535–47.
Powell C, Blighe A, Froggatt K, McCormack B, Woodward-Carlton B, Young J, et al. Family involvement in timely detection of changes in health of nursing homes residents: a qualitative exploratory study. J Clin Nurs. 2018;27(1–2):317–27.
Nordberg G, Wimo A, Jönsson L, Kåreholt I, Sjölund BM, Lagergren M, et al. Time use and costs of institutionalised elderly persons with or without dementia: results from the Nordanstig cohort in the Kungsholmen project—a population based study in Sweden. Int J Geriatr Psychiatry. 2007;22(7):639–48.
Buylova Gola A, Morris S, Candy B, Davis S, King M, Kupeli N, et al. Healthcare utilization and monetary costs associated with agitation in UK care home residents with advanced dementia: a prospective cohort study. Int Psychogeriatr. 2020;32(3):359–70.
Angeles RC, Berge LI, Gedde MH, Kjerstad E, Vislapuu M, Puaschitz NG, et al. Which factors increase informal care hours and societal costs among caregivers of people with dementia? A systematic review of resource utilization in dementia (RUD). Heal Econ Rev. 2021;11(1):1–15.
Husebo BS, Ballard C, Aarsland D, Selbaek G, Slettebo DD, Gulla C, et al. The effect of a multicomponent intervention on quality of life in residents of nursing homes: a randomized controlled trial (COSMOS). J Am Med Dir Assoc. 2019;20(3):330–9.
Husebo BS, Flo E, Aarsland D, Selbaek G, Testad I, Gulla C, et al. COSMOS-improving the quality of life in nursing home patients: protocol for an effectiveness-implementation cluster randomized clinical hybrid trial. Implement Sci. 2015;10(1):1-13.
Luttenberger K, Graessel E. Recording care time in nursing homes: development and validation of the "RUD-FOCA" (resource utilization in dementia-formal care). Int Psychogeriatr. 2010;22(8):1291–300.
Wimo A, Gustavsson A, Jonsson L, Winblad B, Hsu MA, Gannon B. Application of resource utilization in dementia (RUD) instrument in a global setting. Alzheimers Dement. 2013;9(4):429–35 e17.
Perneczky R, Wagenpfeil S, Komossa K, Grimmer T, Diehl J, Kurz A. Mapping scores onto stages: mini-mental state examination and clinical dementia rating. Am J Geriatr Psychiatry. 2006;14(2):139–44.
Selbaek G, Kirkevold O, Sommer OH, Engedal K. The reliability and validity of the Norwegian version of the neuropsychiatric inventory, nursing home version (NPI-NH). Int Psychogeriatr. 2008;20(2):375–82.
Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. The Gerontologist. 1969;9(3_Part_1):179–86.
ATC/DDD index. Oslo: WHO collaborating Centre for Drug Statistics Methodology; 2015.
Dunn G, Mirandola M, Amaddeo F, Tansella M. Describing, explaining or predicting mental health care costs: a guide to regression models. Methodological review. Br J Psychiatry. 2003;183(5):398–404.
Neelon B, O'Malley AJ, Smith VA. Modeling zero-modified count and semicontinuous data in health services research part 1: background and overview. Stat Med. 2016;35(27):5070–93.
Akaike H. A new look at the statistical model identification. IEEE Trans Autom Control. 1974;19(6):716–23.
Døhl Ø, Garåsen H, Kalseth J, Magnussen J. Variations in levels of care between nursing home patients in a public health care system. BMC Health Serv Res. 2014;14(1):108.
Kjøs BØ, Havig AK. An examination of quality of care in Norwegian nursing homes–a change to more activities? Scand J Caring Sci. 2016;30(2):330–9.
Kirkevold O, Engedal K. The quality of care in Norwegian nursing homes. Scand J Caring Sci. 2006;20(2):177–83.
Drennan VM, Ross F. Global nurse shortages-the facts, the impact and action for change. Br Med Bull. 2019;130(1):25–37.
Ribeiro O, Araújo L, Figueiredo D, Paúl C, Teixeira L. The Caregiver Support Ratio in Europe: Estimating the Future of Potentially (Un) Available Caregivers: Healthcare; 2022. Multidisciplinary Digital Publishing Institute
Førsund LH, Ytrehus S. Finding a place to connect: a qualitative study exploring the influences of the physical and social environments on spouses’ opportunities to maintain relationships when visiting a partner with dementia living in long-term care. Dementia. 2018;17(7):858–79.
Anderiesen H, Scherder EJ, Goossens RH, Sonneveld MH. A systematic review–physical activity in dementia: the influence of the nursing home environment. Appl Ergon. 2014;45(6):1678–86.
Gaugler JE, Anderson K, Zarit S, Pearlin L. Family involvement in nursing homes: effects on stress and well-being. Aging Ment Health. 2004;8(1):65–75.
Cohen LW, Zimmerman S, Reed D, Sloane PD, Beeber AS, Washington T, et al. Dementia in relation to family caregiver involvement and burden in long-term care. J Appl Gerontol. 2014;33(5):522–40.
Martin-Cook K, Hynan L, Chafetz PK, Weiner MF. Impact of family visits on agitation in residents with dementia. Am J Alzheimers Dis Other Dement. 2001;16(3):163–6.
Scherder EJA, Bogen T, Eggermont LHP, Hamers JPH, Swaab DF. The more physical inactivity, the more agitation in dementia. Int Psychogeriatr. 2010;22(8):1203–8.
Traynor V, Veerhuis N, Johnson K, Hazelton J, Gopalan S. Evaluating the effects of a physical activity on agitation and wandering (PAAW) experienced by individuals living with a dementia in care homes. J Res Nurs. 2018;23(2–3):125–38.
National Academies of Sciences E, Medicine. The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff. 2022.
Livingston G, Huntley J, Sommerlad A, Ames D, Ballard C, Banerjee S, et al. Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. Lancet. 2020;396(10248):413–46.
Ballard C, Corbett A, Orrell M, Williams G, Moniz-Cook E, Romeo R, et al. Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: a cluster-randomised controlled trial. PLoS Med. 2018;15(2):e1002500.
Gedde MH, Husebo BS, Mannseth J, Kjome RL, Naik M, Berge LI. Less is more: the impact of deprescribing psychotropic drugs on behavioral and psychological symptoms and daily functioning in nursing home patients. Results from the cluster-randomized controlled COSMOS trial. Am J Geriatr Psychiatry. 2021;29(3):304–15.
Birkenhager-Gillesse EG, Kollen BJ, Achterberg WP, Boersma F, Jongman L, Zuidema SU. Effects of psychosocial interventions for behavioral and psychological symptoms in dementia on the prescription of psychotropic drugs: a systematic review and Meta-analyses. J Am Med Dir Assoc. 2018;19(3):276:e1–9.
Guralnik JM, LaCroix AZ, Abbott RD, Berkman LF, Satterfield S, Evans DA, et al. Maintaining mobility in late life. I. Demographic characteristics and chronic conditions. Am J Epidemiol. 1993;137(8):845–57.
Schulz C, Lindlbauer I, Rapp K, Becker C, Konig HH. Long-term effectiveness of a multifactorial fall and fracture prevention program in Bavarian nursing homes: an analysis based on health insurance claims data. J Am Med Dir Assoc. 2017;18(6):552:e7–e17.
Tjia J, Lemay CA, Bonner A, Compher C, Paice K, Field T, et al. Informed family member involvement to improve the quality of dementia care in nursing homes. J Am Geriatr Soc. 2017;65(1):59–65.
Smit D, De Lange J, Willemse B, Pot AM. Predictors of activity involvement in dementia care homes: a cross-sectional study. BMC Geriatr. 2017;17(1):1–19.
Tasseron-Dries PEM, Smaling HJA, Doncker S, Achterberg WP, van der Steen JT. Family involvement in the Namaste care family program for dementia: a qualitative study on experiences of family, nursing home staff, and volunteers. Int J Nurs Stud. 2021;121:103968.
World Medical Association. World medical association declaration of Helsinki. Ethical principles for medical research involving human subjects. Bull World Health Organ. 2001;79(4):373.