Recruiting and Retaining Dyads of Hospitalized Persons with Dementia and Family Caregivers

Abstract

Persons with dementia have high rates of hospitalization, and along with their caregivers commonly experience negative hospital outcomes. The recruitment and retention of acutely ill older adults with dementia and caregivers can pose a challenge to investigators and threaten the validity of findings. The challenges encountered in an ongoing cluster randomized clinical trial in dyads of hospitalized persons with dementia and family care partners are described. The trial tests the efficacy of a nurse–family partnership model that aims to improve the following: (a) the physical and cognitive recovery in hospitalized persons with dementia, and (b) caregiver preparedness and anxiety. Strategies that address challenges include careful preplanning and preparation with the hospital site, strong communication with dyads and between team members, and honoring preferences and needs related to communication.

Keywords

caregivers dementia dyadic recruitment hospitalization

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References

Alzheimer’s Association. (2021). 2021 Alzheimer’s disease facts and figures. Alzheimer’s Dementia, 17(3), 327–406.

Avelino-Silva

T. J.

Campora

Curiati

J. A. E.

Jacob-Filho

(2017). Association between delirium superimposed on dementia and mortality in hospitalized older adults: A prospective cohort study. PLoS Medicine, 14(3), e1002264. https://doi.org/10.1371/journal.pmed.1002264

Benbow

S. M.

Jolley

(2012). Dementia: Stigma and its effects. Neurodegenerative Disease Management, 2(2), 165–172.

Bernal

Sáez-Santiago

(2006). Culturally centered psychosocial interventions. Journal of Community Psychology, 34(2), 121–132.

Boltz

Chippendale

Lee

K.-H.

Trotta

(2018a). The Influence of family caregiver factors upon pre-admission functional decline in hospitalized persons with dementia. Archives of Gerontology and Geriatrics, 74, 49–54.

Boltz

Chippendale

Resnick

Galvin

. (2015a). Anxiety in family caregivers of hospitalized persons with dementia: Contributing factors and responses. Alzheimer Disease & Associated Disorders, 29(3), 236–241. https://doi.org/10.1097/WAD.0000000000000072

Boltz

Chippendale

Resnick

Galvin

. (2015b). Testing family centered, function-focused care in hospitalized persons with dementia. Neurodegenerative Disease Management, 5(3), 203–215. https://doi.org/10.2217/nmt.15.10

Boltz

Kuzmik

Resnick

Trotta

Mogle

BeLue

Leslie

Galvin

(2018b). Reducing disability via a family-centered intervention for acutely ill persons with Alzheimer’s disease and related dementias: Protocol of a cluster-randomized controlled trial (Fam-FFC Study). Trials, 19, 496. https://doi.org/10.1186/s13063-018-2875-1

Chang

C.-C. H.

Yang

H.-C.

Tang

Ganguli

(2009). Minimizing attrition bias: A longitudinal study of depressive symptoms in an elderly cohort. International Psychogeriatrics, 21(5), 869–878. https://doi.org/10.1017/S104161020900876X

10.

Daiello

L. A.

Gardner

Epstein-Lubow

Butterfield

Gravenstein

(2014). Association of dementia with early rehospitalization among medicare beneficiaries. Archives of Gerontology and Geriatrics, 59(1), 162–168. https://doi.org/10.1016/j.archger.2014.02.010

11.

Drame

Lang

P. O.

Jolly

Narbey

Mahmoudi

Laniece

Somme

Gauvain

J.-B.

Heitz

Voisin

de Wazieres

Gonthier

Ankri

Saint-Jean

Jeandel

Vouturier

Blanchard

Novella

J. L.

(2012). Nursing home admission in elderly subjects with dementia: Predictive factors and future challenges. Journal of the American Medical Directors Association, 13(1), e17–e83. https://doi.org/10.1016/j.jamda.2011.03.002

12.

Feast

A. R.

White

Candy

Kupeli

Sampson

E. L.

(2020). The effectiveness of interventions to improve the care and management of people with dementia in general hospitals: A systematic review. International Journal of Geriatric Psychiatry, 35(5), 463–488.

13.

Feng

Coots

L. A.

Kalaganova

Wiener

J. M.

(2014). Hospital and ED use among medicare beneficiaries with dementia varies by setting and proximity to death. Health Affairs, 33(4), 683. https://doi.org/10.1377/hlthaff.2013.1179

14.

Friz

A. M.

Benson

Mullen

Block

Gilmore-Bykovskyi

(2020). Tailoring research recruitment for acute care settings recommendations from people with dementia and their caregivers. Alzheimer Disease and Associated Disorders. https://doi.org/10.1097/WAD.0000000000000419

15.

Galvin

J. E.

Roe

C. M.

Xiong

Morris

J. C.

(2006). The validity and reliability of the AD8 informant interview for dementia. Neurology, 67(11), 1942–1948. https://doi.org/10.1212/01.wnl.0000247042.15547.eb

16.

Gilmore-Bykovskyi

A. L.

Jin

Gleason

Flowers-Benton

Block

L. M.

Dilworth-Anderson

Barnes

Shah

M. N.

Zuelsdorff

(2019). Recruitment and retention of underrepresented populations in Alzheimer’s disease research: A systematic review. Alzheimer’s Dementia, 5, 751–770.

17.

Holden

T. R.

Keller

Kim

Gehring

Schmitz

Hermann

Gilmore-Bykovskyi

Kind

J. H.

(2018). A procedural framework to facilitate hospital-based informed consent for dementia research. Journal of the American Geriatric Society, 66(12), 2243–2248. https://doi.org/10.1111/jgs.15525

18.

Hung

Phinney

Chaudhury

Rodney

Tabamo

Bohl

(2017). “Little things matter!” Exploring the perspectives of patients with dementia about the hospital environment. International Journal of Older People Nursing, 12(3), e12153.

19.

Innes

Kelly

Scerri

Abela

(2016). Living with dementia in hospital wards: A comparative study of staff perceptions of practice and observed patient experience. International Journal Older People Nursing, 11(2), 94–106. https://doi.org/10.1111/opn.12102

20.

Jacobsen

Ran

Liu

Chang

C. C.-H.

Ganguli

. (2020). Predictors of attrition in a longitudinal population-based study of aging. International Psychogeriatrics. https://doi.org/10.1017/S1041610220000447

21.

Kiely

D. K.

Jones

R. N.

Bergmann

M. A.

Murphy

K. M.

Oray

E. J.

Marcantonio

E. R.

(2006). Association between delirium resolution and functional recovery among newly admitted postacute facility patients. Journal of Gerontology A Biological Science Medical Science, 61(2), 204–208. https://doi.org/10.1093/gerona/61.2.204

22.

Kiely

D. K.

Jones

R. N.

Bergmann

M. A.

Murphy

K. M.

Oray

E. J.

Marcantonio

E. R.

(2007). Association between psychomotor activity delirium subtypes and mortality among newly admitted post-acute facility patients. Journal of Gerontology A Biological Science Medical Science, 62(2), 174–179. https://doi.org/10.1093/gerona/62.2.174

23.

Kolanowski

Mulhall

Yevchak

Hill

Fick

(2013). The triple challenge of recruiting older adults with dementia and high medical acuity in skilled nursing facilities Journal of Nursing Scholarship, 45(4), 397–404. https://doi.org/10.1111/jnu.12042

24.

Maslow

(2006). How many people with dementia are hospitalized? In Silverstein

N. M.

Maslow

(Eds.), Improving hospital care for persons with dementia (pp. 3–22). Springer Publishing Company.

25.

Mentes

J. C.

Tripp-Reimer

(2002). Barriers and facilitators in nursing home intervention research. Western Journal of Nursing Research, 24(8), 918–936. https://doi.org/10.1177/019394502237702

26.

Mody

Miller

D. K.

McGloin

J. M.

Freeman

Marcantonio

E. R.

Magaziner

Studenski

(2008). Recruitment and retention of older adults in aging research. Journal of the American Geriatrics Society, 56(12), 2340–2348. https://doi.org/10.1111/j.1532-5415.2008.02015.x

27.

Morris

J. C.

(1997). Clinical dementia rating: A reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. International Psychogeriatrics, 9(S1), 173–178. https://doi.org/10.1017/s1041610297004870

28.

Nasreddine

Phillips

Bédirian

Charbonneau

Whitehead

Collin

Cummings

J. L.

Chertkow

(2005). The Montreal cognitive assessment (MoCA): A brief screening tool for mild cognitive impairment. Journal of the American Geriatrics Society, 53(4), 695–699. https://doi.org/10.1111/j.1532-5415.2005.53221.x

29.

National Alzheimer Act. (2019). National plan to address Alzheimer’s disease: 2019 update. https://aspe.hhs.gov/report/national-plan-address-alzheimers-disease-2019-update

30.

Pfeffer

R. I.

Kurosaki

T. T.

Harrah

C. H.

Chance

J. M.

Filos

(1982). Measurement offunctional activities in older adults in the community. Journal of Gerontology, 37(3), 323–329. https://doi.org/10.1093/geronj/37.3.323

31.

Resnick

Gruber-Baldini

A. L.

Pretzer-Aboff

Galik

Buie

V. C.

Russ

Zimmerman

(2007). Reliability and validity of the evaluation to sign consent measure. Gerontologist, 47(1), 69–77. https://doi.org/10.1093/geront/47.1.69

32.

Røsvik

Rokstad

A. M. M.

(2020). What are the needs of people with dementia in acute hospital settings, and what interventions are made to meet these needs? A systematic integrative review of the literature. BMC Health Services Research, 20(1), 723. https://doi.org/10.1186/s12913-020-05618-3

33.

Shankar

K. N.

Hirschman

K. B.

Hanlon

A. L.

Naylor

M. D.

(2014). Burden in caregivers of cognitively impaired elderly adults at time of hospitalization: A cross-sectional analysis. Journal of the American Geriatric Society, 62(2), 276–284.

34.

Slaughter

Cole

Jennings

Reimer

M. A.

(2016). Consent and assent to participate in research from people with dementia. Nursing Ethics, 14(1), 27–40.

35.

Szabo

S. M.

Whitlatch

C. J.

Orsulic-Jeras

Johnson

J. D.

(2018). Recruitment challenges and strategies: Lessons learned from an early-stage dyadic intervention (innovative practice). Dementia, 17(5), 621–626. https://doi.org/10.1177/1471301216659608

36.

Tao

C. H.

Ellenbecker

Chen

Zhan

Dalton

(2012). The influence of social environmental factors on rehospitalization among patients receiving home health care services. Advances in Nursing Science, 35(4), 346–358. https://doi.org/10.1097/ANS.0b013e318271d2ad

37.

van Beijsterveldt

C. E. M.

van Boxtel

M. P. J.

Bosma

Houx

P. J.

Buntinx

Jolles

. (2002). Predictors of attrition in a longitudinal cognitive aging study: The Maastricht Aging Study (MAAS). Journal of Clinical Epidemiology, 55(3), 216–223. https://doi.org/10.1016/s0895-4356(01)00473-5

38.

Watkin

Blanchard

M. R.

Tookman

Sampson

E. L.

(2012). Prospective cohort study of adverse events in older people admitted to the acute general hospital: Risk factors and the impact of dementia. International Journal of Geriatric Psychiatry, 27(1), 76–82. https://doi.org/10.1002/gps.2693

39.

Weng

C.-F.

Lin

K. P.

F.-P.

Chen

J.-H.

Wen

C.-J.

Peng

J.-H.

Tseng

A. H.

Chan

D.-C.

(2019). Effects of depression, dementia, and delirium on activities of daily living in elderly patients after discharge. BMC Geriatrics, 19(1), 261. https://doi.org/10.1186/s12877-019-1294-9

40.

Werner

Mittelman

M. S.

Goldstein

Heinik

(2012). Family stigma and caregiver burden in Alzheimer’s disease. The Gerontologist, 52(1), 89–97.