Living with and Caring for Patients with Alzheimer’s Disease in Nursing Homes

Background: Prognostic studies in the context of Alzheimer's disease (AD) mainly predicted time to dementia. However, it is questionable whether onset of dementia is the most relevant outcome along the AD disease trajectory from the perspective of patients and their care partners. Therefore, we aimed to identify the most relevant outcomes from the viewpoint of patients and care partners. Methods:We used a two-step, mixed-methods approach. As a first step we conducted four focus groups in the Netherlands to elicit a comprehensive list of outcomes considered important by patients (n = 12) and care partners (n = 14) in the prognosis of AD. The focus groups resulted in a list of 59 items, divided into five categories. Next, in an online European survey, we asked participants (n = 232; 99 patients, 133 care partners) to rate the importance of all 59 items (5-point Likert scale). As participants were likely to rate a large number of outcomes as "important" (4) or "very important" (5), we subsequently asked them to select the three items they considered most important. Results:The top-10 lists of items most frequently mentioned as "most important" by patients and care partners were merged into one core outcome list, comprising 13 items. Both patients and care partners selected outcomes from the category "cognition" most often, followed by items in the categories "functioning and dependency" and "physical health." No items from the category "behavior and neuropsychiatry" and "social environment" ended up in our core list of relevant outcomes. Conclusion:We identified a core list of outcomes relevant to patients and care partner, and found that prognostic information related to cognitive decline, dependency, and physical health are considered most relevant by both patients and their care partners.

show abstract

Identifying relevant outcomes in the progression of Alzheimer's disease; what do patients and care partners want to know about prognosis?

Mank

Maurik

Bakker

et al. 2021

A&D Transl Res & Clin Interv

View full text Add to dashboard Cite

show abstract

“Embracing The Faith”: The Contribution of Islamic Beliefs on the Provision of Care for People with Parkinson’s Disease in New Zealand and Indonesia

Setyawati,

Parsons,

Laing

et al. 2023

J Relig Health

View full text Add to dashboard Cite

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

Tochel

Smith

Baldwin

et al. 2019

Alz & Dem Diag Ass & Dis Mo

View full text Add to dashboard Cite

Introduction Clinical trials involving patients with Alzheimer's disease (AD) continue to try to identify disease‐modifying treatments. Although trials are designed to meet regulatory and registration requirements, many do not measure outcomes of the disease most relevant to key stakeholders. Methods A systematic review sought research that elicited information from people with AD, their caregivers, and health‐care professionals on which outcomes of the disease were important. Studies published in any language between 2008 and 2017 were included. Results Participants in 34 studies described 32 outcomes of AD. These included clinical (memory, mental health), practical (ability to undertake activities of daily living, access to health information), and personal (desire for patient autonomy, maintenance of identity) outcomes of the disease. Discussion Evidence elicited directly from the people most affected by AD reveals a range of disease outcomes that are relevant to them but are not commonly captured in clinical trials of new treatments.

show abstract

scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.

Contact Info

hi@scite.ai

10624 S. Eastern Ave., Ste. A-614

Henderson, NV 89052, USA

Blog Terms and Conditions API Terms Privacy Policy Contact Cookie Preferences Do Not Sell or Share My Personal Information

Made with 💙 for researchers

Part of the Research Solutions Family.

Living with and Caring for Patients with Alzheimer’s Disease in Nursing Homes

Cited by 12 publications

References 28 publications

Identifying relevant outcomes in the progression of Alzheimer's disease; what do patients and care partners want to know about prognosis?

Identifying relevant outcomes in the progression of Alzheimer's disease; what do patients and care partners want to know about prognosis?

“Embracing The Faith”: The Contribution of Islamic Beliefs on the Provision of Care for People with Parkinson’s Disease in New Zealand and Indonesia

What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health‐care professionals? A systematic review

Contact Info

Product

Resources

About