Nichols E, Szoeke CE, Vollset SE, Abbasi N, Abd-Allah F, Abdela J, et al. Global, regional, and national burden of Alzheimer’s disease and other dementias, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(1):88–106.
Article
Google Scholar
Alzheimer’s Society. Dementia: UK update; 2014. Available from: https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/dementia_uk_update.pdf. Accessed 26 Oct 2021.
Canadian Institute for Health Information. Dementia in home and community care; 2021. Available from: https://www.cihi.ca/en/dementia-in-canada/dementia-care-across-the-health-system/dementia-in-home-and-community-care. Accessed 26 Oct 2021.
Chambers LW, Bancej C, McDowell I. Prevalence and monetary costs of dementia in Canada: population health expert panel. Toronto, ON, Canada: The Alzheimer Society of Canada. Public Health Agency of Canada; 2016
Black BS, Johnston D, Rabins PV, Morrison A, Lyketsos C, Samus QM. Unmet needs of community-residing persons with dementia and their informal caregivers: Findings from the maximizing independence at home study. J Am Geriatr Soc. 2013;61(12):2087–95.
Article
PubMed
PubMed Central
Google Scholar
Roland KP, Chappell NL. Meaningful activity for persons with dementia: family caregiver perspectives. Am J Alzheimer’s Dis Other Demen. 2015;30(6):559–68.
Article
Google Scholar
Tang WK, Chan CY. Effects of psychosocial interventions on self-efficacy of dementia caregivers: a literature review. Int J Geriatr Psychiatry. 2016;31(5):475–93.
Article
PubMed
Google Scholar
Van’t Leven N, Prick AE, Groenewoud JG, Roelofs PD, de Lange J, Pot AM. Dyadic interventions for community-dwelling people with dementia and their family caregivers: a systematic review. Int Psychogeriatr. 2013;25(10):1581–603.
Article
PubMed
Google Scholar
DiZazzo-Miller R, Winston K, Winkler SL, Donovan ML. Family caregiver training program (FCTP): a randomized controlled trial. Am J Occup Ther. 2017. https://doi.org/10.5014/ajot.2017.022459.
Article
PubMed
Google Scholar
Jensen M, Agbata IN, Canavan M, McCarthy G. Effectiveness of educational interventions for informal caregivers of individuals with dementia residing in the community: systematic review and meta-analysis of randomised controlled trials. Int J Geriatr Psychiatry. 2015;30(2):130–43.
Article
PubMed
Google Scholar
McCurry SM, Logsdon RG, Mead J, Pike KC, La Fazia DM, Stevens L, Teri L. Adopting evidence-based caregiver training programs in the real world: outcomes and lessons learned from the STAR-C Oregon translation study. J Appl Gerontol. 2017;36(5):519–36.
Article
PubMed
Google Scholar
Vedel I, Sheets D, McAiney C, Clare L, Brodaty H, Mann J, et al. CCCDTD5: individual and community-based psychosocial and other non-pharmacological interventions to support persons living with dementia and their caregivers. Alzheimer’s Dement Transl Res Clin Interv. 2020. https://doi.org/10.1002/trc2.12086.
Article
Google Scholar
Clarkson P, Hughes J, Roe B, Giebel CM, Jolley D, Poland F, et al. Systematic review: effective home support in dementia care, components and impacts–Stage 2, effectiveness of home support interventions. J Adv Nurs. 2018;74(3):507–27.
Article
PubMed
Google Scholar
Burgio LD, Collins IB, Schmid B, Wharton T, McCallum D, DeCoster J. Translating the REACH caregiver intervention for use by area agency on aging personnel: the REACH OUT program. Gerontologist. 2009;49(1):103–16.
Article
PubMed
PubMed Central
Google Scholar
Huang HL, Kuo LM, Chen YS, Liang J, Huang HL, Chiu YC, et al. A home-based training program improves caregivers’ skills and dementia patients’ aggressive behaviors: a randomized controlled trial. Am J Geriat Psychiatry. 2013;21(11):1060–70.
Article
Google Scholar
Liddle J, Smith-Conway ER, Baker R, Angwin AJ, Gallois C, Copland DA, et al. Memory and communication support strategies in dementia: effect of a training program for informal caregivers. Int Psychogeriatr. 2012;24(12):1927–42.
Article
PubMed
Google Scholar
Llanque SM, Enriquez M, Cheng AL, Doty L, Brotto MA, Kelly PJ, et al. The family series workshop: a community-based psychoeducational intervention. Am J Alzheimer’s Dis Other Demen. 2015;30(6):573–83.
Article
Google Scholar
Simard J. The end-of-life Namaste Care program for people with dementia. 2nd ed. Baltimore, MD: Health Professions Press; 2013.
Google Scholar
Dalkin SM, Lhussier M, Kendall N, Atkinson J, Tolman S. Namaste care in the home setting: developing initial realist explanatory theories and uncovering unintended outcomes. BMJ Open. 2020;10:e033046.
Article
PubMed
PubMed Central
Google Scholar
Bunn F, Lynch J, Goodman C, Sharpe R, Walshe C, Preston N, Froggatt K. Improving living and dying for people with advanced dementia living in care homes: a realist review of Namaste care and other multisensory interventions. BMC Geriatr. 2018;18(1):1–15.
Article
Google Scholar
Karacsony S, Abela MR. Stimulating sense memories for people living with dementia using the Namaste Care programme: What works, how and why? J Clin Nursi. 2021. https://doi.org/10.1111/jocn.15665.
Article
Google Scholar
McNiel P, Westphal J. Namaste care™: a person-centered care approach for Alzheimer’s and advanced dementia. Wes J Nurs Res. 2018;40(1):37–51.
Article
Google Scholar
Nicholls D, Chang E, Johnson A, Edenborough M. Touch, the essence of caring for people with end-stage dementia: a mental health perspective in Namaste Care. Aging Ment Health. 2013;17(5):571–8.
Article
PubMed
Google Scholar
Simard J, Volicer L. Effects of Namaste Care on residents who do not benefit from usual activities. Am J Alzheimer’s Dis Other Demen. 2010;25(1):46–50.
Article
Google Scholar
Stacpoole M, Thompsell A, Hockley J, Simard J, Volicer L. Implementing the Namaste Care programme for people with advanced dementia at the end of their lives: An action research study in six care homes with nursing; 2013. London, UK: St Christopher’s Hospice. Available from: http://www.stchristophers.org.uk/wp-content/uploads/2015/11/Namaste-Care-Study-research-report-final-Feb2014.pdf. Accessed 26 Oct 2021.
Brett JO, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. A systematic review of the impact of patient and public involvement on service users, researchers and communities. Patient. 2014;7(4):387–95.
Article
PubMed
Google Scholar
McConnell T, Best P, Davidson G, McEneaney T, Cantrell C, Tully M. Coproduction for feasibility and pilot randomised controlled trials: learning outcomes for community partners, service users and the research team. Res Involv Engagem. 2018;4(32):1–11.
Google Scholar
Chalmers I, Glasziou P. Avoidable waste in the production and reporting of research evidence. Lancet. 2009;374:86–9.
Article
PubMed
Google Scholar
Treadaway C, Taylor A, Fennell J. Compassionate creativity: co-design for advanced dementia. The Design Society. In: Proceedings of the Fifth International Conference on Design Creativity. 2018; Bath, UK, 2018:1–8.
Caron-Flinterman JF, Broerse JE, Bunders JF. The experiential knowledge of patients: a new resource for biomedical research? Soc Sci Med. 2005;60(11):2575–84.
Article
PubMed
Google Scholar
Allard J, Ballesteros F, Anthony SJ, Dumez V, Hartell D, Knoll G, et al. What does patient engagement mean for Canadian National transplant research program researchers? Res Involv Engagem. 2018;4(1):1.
Article
Google Scholar
Robillard JM, Feng TL. When patient engagement and research ethics collide: lessons from a dementia forum. J Alzheimer’s Dis. 2017;59(1):1–10.
Article
Google Scholar
Domecq PJ, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89.
Article
PubMed
PubMed Central
Google Scholar
VanderKaay S, Moll SE, Gewurtz RE, Jindal P, Loyola-Sanchez A, Packham TL, Lim CY. Qualitative research in rehabilitation science: opportunities, challenges, and future directions. Disabil Rehabil. 2018;40(6):705–13.
Article
PubMed
Google Scholar
Gheduzzi E, Morelli N, Graffigna G, Masella C. Facilitating co-production in public services: empirical evidence from a co-design experience with family caregivers living in a remote and rural area. Health Serv Manag Res. 2021;34(1):21–35.
Article
Google Scholar
Phoenix M, Nguyen T, Gentles SJ, VanderKaay S, Cross A, Nguyen L. Using qualitative research perspectives to inform patient engagement in research. Res Involv Engagem. 2018;4(1):1–5.
Article
Google Scholar
Bethell J, Commisso E, Rostad HM, Puts M, Babineau J, Grinbergs-Saull A, et al. Patient engagement in research related to dementia: A scoping review. Dementia. 2018;17(8):944–75.
Article
PubMed
Google Scholar
Yous ML, Ploeg J, Kaasalainen S, McAiney C. Adapting the Namaste Care program for use with caregivers of community-dwelling older adults with moderate to advanced dementia: A qualitative descriptive study. Can J Aging. 2022;1–13.
Yous ML, Ploeg J, Kaasalainen S, McAiney C. Namaste care delivered by caregivers of community-dwelling older adults with moderate to advanced dementia: a mixed methods study protocol. J Adv Nurs. 2021;77(2):1027–36.
Article
PubMed
Google Scholar
Sandelowski M. Whatever happened to qualitative description? Res Nurs Health. 2000;23(4):334–40.
Article
PubMed
CAS
Google Scholar
Sandelowski M. What’s in a name? Qualitative description revisited. Res Nurs Health. 2010;33(1):77–84.
Article
PubMed
Google Scholar
Kendall N. Namaste Care for people living with advanced dementia: a practical guide for carers and professionals. London: Jessica Kingsley; 2019.
Google Scholar
Canadian Institutes of Health Research. Strategy for patient-oriented research-patient engagement framework. 2019. Available from http://www.cihr-irsc.gc.ca/e/48413.html. Accessed 26 Oct 2021.
Staniszewska S, Brett J, Simera I, Seers K, Mockford C, Goodlad S, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. Res Involv Engagem. 2017. https://doi.org/10.1186/s40900-017-0062-2.
Article
PubMed
PubMed Central
Google Scholar
Patton MQ. Qualitative evaluation and research methods. Beverly Hills: SAGE; 1990.
Google Scholar
McMaster University. Patient and public engagement evaluation tool (PPEET); 2018. Available from https://ppe.mcmaster.ca/our-products/public-patient-engagement-evaluation-tool. Accessed 26 Oct 2021.
Abelson J, Li K, Wilson G, Shields K, Schneider C, Boesveld S. Supporting quality public and patient engagement in health system organizations: development and usability testing of the Public and Patient Engagement Evaluation Tool. Health Expect. 2016;19(4):817–27.
Article
PubMed
Google Scholar
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
Article
Google Scholar
Braun V, Clarke V. Successful qualitative research: a practical guide for beginners. London, England: Sage; 2013.
Google Scholar
Hole GO, Brenna SJ, Graverholt B, Ciliska D, Nortvedt MW. Educating change agents: a qualitative descriptive study of graduates of a Master’s program in evidence-based practice. BMC Med Educ. 2016;16(1):1–9.
Article
Google Scholar
Roberts S, McInnes E, Wallis M, Bucknall T, Banks M, Chaboyer W. Nurses’ perceptions of a pressure ulcer prevention care bundle: a qualitative descriptive study. BMC Nurs. 2016;15(1):1–10.
Article
Google Scholar
QSR International Pty Ltd. NVivo (Version 12); 2018. Available from: https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home
Finlay L. “Outing” the researcher: the provenance, process, and practice of reflexivity. Qual Health Res. 2002;12(4):531–45.
Article
PubMed
Google Scholar
Lincoln YS, Guba EG. Naturalistic inquiry. Beverly Hills, CA: Sage; 1985.
Book
Google Scholar
Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council. Tri-council policy statement: Ethical conduct for research involving humans; 2018. Available from http://www.pre.ethics.gc.ca/eng/policy-politique_tcps2-eptc2_2018.html. Accessed 26 Oct 2021.
Walshe C, Kinley J, Patel S, Goodman C, Bunn F, Lynch J, et al. A four-stage process for intervention description and guide development of a practice-based intervention: refining the Namaste Care intervention implementation specification for people with advanced dementia prior to a feasibility cluster randomised trial. BMC Geriatr. 2019;19(275):1–11.
Google Scholar
Bethell J, Pringle D, Chambers LW, Cohen C, Commisso E, Cowan K, et al. Patient and public involvement in identifying dementia research priorities. J Am Geriatr Soc. 2018;66(8):1608–12.
Article
PubMed
Google Scholar
McAtee RE, Spradley L, Tobey L, Thomasson W, Azhar G, Mercado C. Caregiver burden: caregiving workshops have a positive impact on those caring for individuals with dementia in Arkansas. Patient Exp J. 2021;8:1–7.
Google Scholar
Forsythe LP, Carman KL, Szydlowski V, Fayish L, Davidson L, Hickam DH, et al. Patient engagement in research: early findings from the patient-centered outcomes research institute. Health Aff. 2019;38(3):359–67.
Article
Google Scholar
Hung L, Berndt A, Wallsworth C, Horne N, Gregorio M, Mann J, et al. Involving patients and families in a social robot study. Patient Exp J. 2019;6(2):66–74.
Article
Google Scholar
Holroyd-Leduc J, Resin J, Ashley L, Barwich D, Elliott J, Huras P, et al. Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy. Res Involv Engagem. 2016;2(1):1–9.
Article
Google Scholar
Dupuis SL, Whyte C, Carson J, Genoe R, Meshino L, Sadler L. Just dance with me: An authentic partnership approach to understanding leisure in the dementia context. World Leis J. 2012;54(3):240–54.
Article
Google Scholar
Masoud SS, Glassner AA, Patel N, Mendoza M, James D, Rivette S, White CL. Engagement with a diverse stakeholder advisory council for research in dementia care. Res Sq. 2021. https://doi.org/10.1186/s40900-021-00297-8.
Article
Google Scholar
Corey KL, McCurry MK. When caregiving ends: the experiences of former family caregivers of people with dementia. Gerontologist. 2018;58(2):e87-96.
PubMed
Google Scholar
Kim Y. Korean-American family postcaregivers on dementia caregiving: a phenomenological inquiry. J Gerontol Soc Work. 2009;52(6):600–17.
Article
PubMed
CAS
Google Scholar
Larkin M. Life after caring: the post-caring experiences of former carers. Br J Soc Work. 2009;39(6):1026–42.
Article
Google Scholar
Alzheimer’s Association. 2021 Alzheimer’s disease facts and figures: Special report – Race, ethnicity and Alzheimer's in America; 2021. Available from: https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf. Accessed 26 Oct 2021.
Wiersma EC, O’Connor DL, Loiselle L, Hickman K, Heibein B, Hounam B, et al. Creating space for citizenship: the impact of group structure on validating the voices of people with dementia. Dementia. 2016;15(3):414–33.
Article
PubMed
Google Scholar
Galdas P. Revisiting bias in qualitative research: reflections on its relationship with funding and impact. Int J Qual Methods. 2017;16(1):1–2.
Article
Google Scholar