Caregivers

This research article describes how Alzheimer’s disease clinical trial participants view the role of the study partner and how their view informs the selection process.

The Massachusetts Alzheimer’s Disease Research Center has created several guidebooks that aim to educate patients and their families on a variety of topics.

The Rush Alzheimer’s Disease Center offers downloadable activity booklets for both older adults experiencing memory loss and their families.

A collection of videos from the Johns Hopkins Alzheimer's Disease Research Center that helps raise awareness and provide education on Alzheimer's and research.

Find resources for raising awareness about Alzheimer's and helpful tips for caregivers from the University of Alabama.

The Mesulam Alzheimer’s Disease Research Center offers a monthly email newsletter that includes information and resources on dementia.

This booklet for research participants, patients, caregivers, and families provides information on brain health and Alzheimer's disease.

The Massachusetts Alzheimer’s Disease Research Center offers an eight-page guide for primary caregivers of people with Alzheimer’s disease.

This customizable flyer is designed for community agencies to share critical information about COVID-19, including why older adults and people with chronic conditions are at higher risk, symptoms of COVID-19, what to do if someone gets sick, and ways to spot and avoid COVID-19 scams. Designed to be easy to distribute, for example during wellness checks, the two-sided flyer is also customizable so agencies can add their logo and contact information to the back page.

This webpage provides guidance for caregiving during COVID-19. Information includes facts about COVID-19, handwashing and sanitizing, cleaning the home, self-care, social distancing, home engagement opportunities and managing medical care. A similar resource was posted by several Alzheimer’s Disease Research Centers (ADRCs) to communicate with research participants and the ADRC’s community members.

This special COVID-19 issue of the "Dementia Connection" newsletter compiled by Mayo Clinic Alzheimer’s Disease Research Center provides links to helpful online resources including tips for caregiving, self-protection, and remaining active, healthy, and safe while staying at home during the COVID-19 pandemic.

This article developed by the University of Pennsylvania’s Memory Center offers guidelines to Alzheimer’s and dementia caregivers for managing daily care at home and coping with anxiety during the COVID-19 pandemic. The article includes general tips and anxiety-busting tools, advice on medical care, activity ideas for meaningful engagement, and additional information on COVID-19 and Alzheimer’s disease.

“Conversando con los Cuidadores” is a series of nine short videos that offer practical advice from real people who care for family members with dementia.

The authors analyzed the strategies used to recruit participants at three sites in a large, 15-site dementia study in England. They concluded that successful recruitment of people with dementia and their caregivers requires multiple strategies, close coordination between researchers and clinical service providers, and a detailed understanding of the needs and perspectives of the target population. The authors recommend that large studies should be expected to evaluate and report on their...

The Patient-Centered Outcomes Research Institute (PCORI) created this repository of more than 150 tools and resources for use with patient-centered, stakeholder-engaged research. Repository items are developed by recipients of PCORI research grants, and the Institute makes them publicly available to encourage the use of these engagement practices and methodologies within the broader healthcare research community. The database can be searched by keywords or by criteria in the following categories...

The article addresses ways to facilitate study partner participation in clinical trials, such as by removing logistical barriers, offering payment, and providing paid, protected time off for study visits. The authors suggest that incentivizing participation, especially among non-spousal partners, could improve overall recruitment rates and generalizability of study results. Largent EA, Karlawish J, Grill JD. Study partners: Essential collaborators in discovering treatments for Alzheimer's...

Semi-structured qualitative telephone interviews were conducted with 17 staff members from a United Kingdom-based Alzheimer’s trial (Reducing pathology in Alzheimer’s Disease through Angiotensin TaRgeting, RADAR) to explore barriers and facilitators to recruitment. The researchers found that challenges to Alzheimer’s trial recruitment can occur at the care pathway and at clinician, patient, and companion levels. They suggest that recruitment can be facilitated by improving diagnostic processes...

This 3-minute video features Dan Gasby, who with his wife, the celebrity B. (Barbara) Smith, has advocated for greater public awareness of the disease and for participation in clinical trials. Smith was diagnosed with early Alzheimer’s disease in 2014.

The Stanford ADRC provides videos and presentations about Alzheimer's and related dementias in Spanish.

This infographic from the Stanford Alzheimer's Disease Research Center presents illustrated images and facts about Latino caregivers.

NIA has created four video stories profiling participants in Alzheimer’s disease clinical trials. These videos feature participants from different walks of life who discuss what motivates them and how research staff support them to participate in studies and trials. The videos are intended to be shared as part of engagement and recruitment efforts for clinical studies. Each video was made with a specific audience in mind: Will’s Story —When both of Will’s parents developed dementia, he and his...

Online advertising is a new frontier in research recruitment and Google Adwords is one method of online advertising. However, only a handful of studies have described its cost and effectiveness and none have focused on older adults. This study created a Google Adwords campaign to recruit family caregivers of people with dementia. The study found that the ads were viewed more than 450,000 times in a 6-week period, but only 49 surveys were completed, at a cost of $122 per survey. The paper...

This study tested different types of appeals to participate in research studies. A random sample of 2,014 caregiving units (composed of an older adult, a family member, and a home care worker) were obtained from a list of Israeli long-term care insurance beneficiaries. Participants received either a formal and succinctly phrased letter followed by a recruitment phone call; the formal letter, but a revised, more personal recruitment phone call; or a revised letter and a revised phone call. The...

A two-sided informational card that provides seven frequently asked questions about brain donation and a testimonial from a Chinese-American study partner.

This paper describes the barriers and challenges experienced by a research team in recruiting early-stage dementia caregiving dyads into research studies. Among other factors, the team found that recruitment and enrollment success depended on having well-trained recruitment staff who are knowledgeable about the study and have experience working with older adults, and more specifically, persons with dementia. Szabo SM, Whitlatch CJ, Orsulic-JEras S, et al. Recruitment challenges and strategies...

Researchers' use of Internet-based surveys and recruitment strategies has increased, but there is little knowledge about their use in different age groups of former dementia caregivers. This analysis describes the use of Internet-based recruitment in young and middle-aged (age 18-64), young-old (age 65-74), and older-old (age 75 and older) former dementia caregivers. A four-step recruitment strategy encompassing a combination of Internet-based and non-Internet-based recruitment strategies was...

Webnovela Mirela is a program for Hispanic/Latino caregivers of individuals with Alzheimer's or other dementia.

This study evaluated the yield and cost of three recruitment strategies—direct mail, newspaper advertisements, and community outreach—for identifying and enrolling dementia caregivers into a trial testing a nonpharmacologic approach to enhancing quality of life of individuals with dementia and their caregivers. A total of 237 dyads enrolled. The total cost of recruitment was $154 per dyad, with direct mail found to be the most effective and least costly method, at $63 per dyad. That compared...

This editorial pertains to African American caregivers of people with dementia, specifically those with type 2 diabetes. The author reviews barriers to recruitment for this population and the experience of church-based recruiting of caregivers age 55 and older with diabetes who also care for a person with dementia. Important factors to success included a respected gatekeeper and relationship building. Barriers included the religious interpretation of dementia behaviors that produced stigma among...

An annual event billed as “the largest Chinese dementia-specific educational conference in the nation” and conducted in Chinese (Mandarin) is targeted to concerned community members, healthcare professionals, and families affected by Alzheimer’s disease and related dementia. The forum is cosponsored by the University of California Memory and Aging Center and other organizations. At the 2017 event, held on a Saturday afternoon in the Intel Auditorium in Santa Clara, CA, experts provided updates...

This paper reports on the implementation, development, and early findings of the Care Ecosystem, a supportive care intervention for patients with dementia and their caregivers. The objective was to develop and test a scalable model of dementia specialty care that complements primary care with additional caregiver support and education; medication consultation; and support in planning for future medical, financial, and legal decisions. Care is delivered via the phone and web by unlicensed care...

This toolkit, originally developed by the African American Dementia Outreach Partnership and now distributed by the Balm in Gilead’s National Brain Health Center for African Americans, contains many resources for caregivers and families.

This 72-page manual shares information learned during 4 years of a national grant to build awareness and support related to Alzheimer's disease in the Lexington/Bluegrass area in Kentucky.

This NIA video series covers topics about participating in Alzheimer's disease research.

Penn Memory Center researchers used a multi-phase, theory-driven research process to craft and test advertising messages that would motivate African-American and non-Hispanic white adults to accompany their parent, step-parent, or parent-in-law to see a specialist for a memory evaluation. Staff members created a two-page handout that features images of several full-color ads and encourages organizations that provide services to older adults to make use of them, free of charge. Penn Memory Center...

This project of award-winning photographs of caregivers is featured in the Penn Memory Center's creative space, "Making Sense of Alzheimer's."

The Carl Rinne Lewy Body Dementia Initiative provides support to people with Lewy body dementia and their care partners, educates professionals, and builds public awareness of Lewy body dementia in Michigan. The initiative facilitates three support groups in the Ann Arbor and metro-Detroit areas. The initiative has also created educational materials, expanded materials provided to patients through the cognitive and movement disorders clinics, and increased awareness among primary care providers...

The Wellness Initiative of the Michigan Alzheimer’s Disease Research Center (MADRC) supports personal well-being, stress resilience, and creative self-expression among community caregivers and adults with mild memory loss. Programs are matched to participants’ current needs and include Wellness Day events, monthly wellness groups, and intensive courses in evidence-based skill-building such as mindfulness-based stress reduction.

Analysis of data from more than 5,000 probable Alzheimer’s disease dementia research participants in the National Alzheimer’s Coordinating Center Uniform Data Set found that participants with spousal study partners were more likely to qualify for Alzheimer's clinical trials than participants with adult child study partners. Participants with adult child study partners were more frequently ineligible because of age, residence in a skilled nursing facility, excluded low scores on the Mini-Mental...

The objective of this study was to assess the prevalence of study partner types and measure how these types associate with participant-related outcome measures. Retrospective analyses were conducted of six Alzheimer’s Disease Cooperative Study randomized clinical trials. Study partners were categorized as spouse, adult child, or other. According to the analyses, people with nonspousal caregivers less frequently participate in Alzheimer’s disease dementia trials. The study authors concluded that...

This study examined researchers’ perspectives on the role of study partners in dementia research. Semi-structured individual interviews were conducted with 17 researchers (principal investigators, study coordinators, and research nurses) at two academic research sites. According to researchers, study partners either make or help make research enrollment and post-enrollment decisions, serve as knowledgeable informants for the participants, manage the logistics that enable participants to comply...

Most Alzheimer’s disease caregivers are not spouses and yet most Alzheimer’s disease dementia trials enroll spousal study partners. This study examined the association between caregiver relationship to the patient and willingness to enroll in an Alzheimer’s disease clinical trial and how caregiver burden and research attitudes modify willingness. Interviews were conducted with 103 caregivers (spouses, domestic partners, or adult children) who met criteria for ability to serve as a study partner...

Data from the National Alzheimer’s Coordinating Center Uniform Data Set was examined for the frequency of informant replacement among Alzheimer’s disease dementia participants. The data was also analyzed to determine the patient and informant characteristics associated with replacement and to evaluate how replacement affected research outcome measures. Findings suggest that informant replacement is relatively common, may have implications to study analyses, and warrants further examination in...

This tip sheet includes information on advance care planning for older adults, including developing a will, advance directive, healthcare power of attorney, and more. It also includes resources for older adults to learn more. The information in this tip sheet is also available online on the NIA website.

A one-page handout from the Rush Alzheimer’s Disease Center provides information for participants to share with family members about their participation in the Minority Aging Research Study (MARS) Organ Donation Program. The handout includes information on MARS, which is open to African Americans 65 years old or older; why donation is important; what to do at the time of death; and the process, including transportation, what will be removed, length of the procedure, and the follow-up report that...

This online article is designed as a guide to support healthcare professionals in managing older patients with cognitive impairment or dementia, suggests care strategies following patients' diagnostic evaluation. The article discusses developing management and patient support plans, tips for communicating with the patient and caregiver, ways to discuss clinical trials, and resources for patients and professionals to learn more.

This booklet from the National Institute on Aging and the National Institute of Neurological Disorders and Stroke, provides an overview of frontotemporal dementia, primary progressive aphasia, and related movement disorders. It gives information about the disorders' symptoms, causes, diagnosis, treatment, and care. The information in this booklet is also available online on the NIA website.

This booklet provides basic information about Lewy body dementia, including diagnosis, treatment, caregiving, and information for people living with Lewy body dementia.

This prospective qualitative study documented the subjective experiences of study partners in dementia research. Up to three semi-structured interviews were conducted with each of 62 study partners involved in a range of dementia studies. Content analysis demonstrated that study partners perform a range of tasks—often within the context of being a caregiver—that enable cognitively impaired individuals to participate in dementia research. These tasks present study partners with unique burdens and...

This web-based project is designed to inform visitors about the need for robust and diverse participation in Alzheimer's research and to allow interested families to share their research interests. The website features a blog with helpful information for people with Alzheimer's and their families and caregivers. Visitors are encouraged to join ACTNOW to receive email updates about Alzheimer's research and community events.