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Abstract

Background:

The impacts of poor oral health on overall health are significant for community-dwelling older adults, particularly those needing daily care support. Oral health literacy remains low overall and the myth that poor oral health is a normal part of aging persists. There is a scarcity of educational programming to equip caregivers with the skills to maintain good oral health for their older care recipients. Maine’s MOTIVATE at Home program aims to address this critical need for oral health education for care partners of community-dwelling older adults.

Methods:

A statewide needs assessment survey was conducted with caregivers of older adults (N = 135) to identify knowledge and skill gaps and preferences for learning.

Results:

One in 4 care recipients lacked access to a regular dentist and 45.2% had not visited a dental clinic in the last year. Caregivers report a lack of oral health conversations with dental and healthcare providers but high levels of reported interest in learning more about older adult oral health.

Conclusions:

Findings demonstrate an opportunity for educating caregivers about the connection between oral health and overall health. Such efforts should accommodate the diverse learning needs of caregivers and their desire for flexibility in content delivery.

Keywords

oral health oral care prevention oral care strategies education caregiving older adults

Introduction

Oral health inequities and disparities exist for many older adults with a combination of factors contributing to this public health problem.¹ Aging often brings decreased access to oral health care due to cost, insurance, access, awareness, and information.² Poor oral health significantly impacts community-dwelling older adults, especially those lacking care access,³ contributing to disease burden, disability, and overall health decline.⁴ Common oral health issues include difficulty eating or chewing, dry mouth, toothaches or sensitive teeth, and bad breath. Other problems that were reported included decayed teeth or cavities, swollen gums, and bleeding gums.⁵ Despite these risks, oral health literacy remains inadequate,^6,7 and dental needs of older adults are often overlooked, even though oral health has been linked to conditions like heart disease, diabetes, Alzheimer’s, and osteoporosis.^8,9

While nearly 80% of older adults retain their natural teeth in later life, only half see a dentist regularly.^1,10 Barriers like lack of insurance and access, particularly for homebound individuals,¹¹ and underlying health conditions further compound these issues. Systemic barriers also limit access for low-income individuals, uninsured populations, racial and ethnic minorities, immigrants, and rural residents.^12,13

Caregivers as a Key Population for Oral Health Education

Approximately 1 in 5 adults provide unpaid care to a family member, with many facing dual challenges of full-time employment (53%) and sole caregiving responsibilities (43%).¹⁴ Poor oral health in care recipients increases care partner stress,¹⁵ yet accessible caregiver education is limited, despite its demonstrated effectiveness.¹⁶ The critical need to educate care partners stems from the impact of poor oral health on both the well-being of older adult care recipients and the significant burden it places on their families; care partner stress and burden are increased by the health problems of their care recipients.² It is important to address this educational gap, as empowering caregivers with oral health knowledge directly mitigates the negative health outcomes for older adults and reduces the significant stress and burden experienced by their care partners.^15,16 Thus, it is important to prioritize care partner education to prevent the cascade of health issues and increased care burdens that arise from poor oral health in older adults; in short, preventive care is more effective than reactive care.^8,10

Family and informal caregivers face similar challenges to those found in long-term care settings. To address these identified gaps, the Lunder-Dineen Health Education Alliance of Maine (Lunder-Dineen) developed the MOTIVATE program, offering free oral health education to interprofessional teams in long-term care (LTC), improving staff knowledge and resident/family satisfaction. MOTIVATE stands for Maine’s Oral Team-Based Initiative: Vital Access to Education.¹⁷ This program has been implemented across Maine with positive results.¹⁸ Other programs such as Mouthcare Without a Battle and Iowa’s Mouth Care Matters exist for long-term care staff.^19,20 However, a gap remains in education for caregivers of community-dwelling older adults, a particularly critical need in Maine where 97% of adults 65+ years live at home²¹ and in a state that is aging (median age = 45.1 years vs 38.5 years nationally) and rural (61% of residents live in rural areas), compounded by poverty, lack of insurance, and limited dental access.^22,23 Recognizing that caregivers in the community lacked access to oral health training, the MOTIVATE program provided a foundation for a new audience: informal and family caregivers of older adults.

Since most older adults reside at home, rather than in nursing home settings, MOTIVATE at Home provides free, stakeholder-informed, evidence-based oral health education to care partners. This was the result of modifying the LTC MOTIVATE program using input from caregivers. The goal of this modified program is to improve oral health literacy, teach evidence-based oral hygiene and the role that all caregivers can play in supporting oral care for their person, even if they don’t provide hands-on care. Addressing social determinants of health,²⁴ the program aims to improve older adult oral health through targeted education and community connections. To best customize the existing interprofessional oral health education for a community audience, a statewide needs assessment survey was undertaken to identify the educational needs of caregivers caring for community dwelling older adults. The results of this needs assessment are presented here.

Methods

A needs assessment survey was conducted with care partners of older Mainers to determine oral health care knowledge gaps, training needs, and preferred learning strategies. For the purposes of this study, a care partner or caregiver was defined as anyone aiding a family member or friend with day-to-day care.²⁵ A care recipient is someone who depends on a care partner for care. Throughout this paper we use the terms “caregiver” and “care partner” interchangeably based on guidance received from the caregiver advisory committee that advised this study.

This needs assessment was developed to inform the curriculum of the MOTIVATE at Home program and ensure that it met the most pressing educational needs of caregivers of older adults. The survey instrument drew upon existing tools, including a 2020 survey from the Indiana Institute on Disability and Community,²⁶ a 2013 study by Mac Giolla Phadraig et al,²⁷ and Johansson et al’s²⁸ study on public health education placements. The draft survey was reviewed and piloted by Lunder-Dineen staff, the MOTIVATE volunteer statewide expert advisory team (including national, local, and regional representatives from various healthcare disciplines from academia to practice), as well as a caregiver ad hoc advisory group facilitated by a local area agency on aging. Feedback was incorporated into the final 60-item survey, covering oral health knowledge and attitudes, access and beliefs, education preferences, and demographics.

Surveys were distributed statewide via partnerships with area agencies on aging, university research registries, the Maine Community Health Worker Network, the Maine Alzheimer’s Association chapter, and through email/Facebook campaigns by the UMaine Center on Aging and the Maine Council on Aging. Surveys were available in paper and online (Qualtrics) formats, and participants were incentivized with a gift card. Data collection occurred from March to August 2022.

A total of 135 care partners participated in the survey, exploring their attitudes and practices related to oral hygiene and care, care recipient information, and learning preferences. Data were analyzed using SPSS version 27, including descriptive statistics and t-tests to examine relationships between dental access and care partner comfort levels, and the impact of care partner beliefs on care recipient dental visits.

Results

Participant demographics (N = 135) and the demographics of their care recipients are summarized in Table 1. Care partners had a mean age of 61 years (SD = 13), slightly older than the national average of 50 years.²⁹ Care recipients had a mean age of 80 years (SD = 9.65).

Table 1.

Demographics of Care Partners and Care Recipients.

Variable	M (SD)	n (%)
Mean age in years
Care partner	61(13)
Care recipient	80 (9.65)
Care partner gender (N = 128)
Female		109 (85.2)
Male		18 (14.1)
Other		1 (0.8)
Care partner race (N = 125)
White		122 (97.6)
Black or African American		1 (0.8)
American Indian/Alaskan Native		1 (0.8)
Other		1 (0.8)
Care recipient race (N = 124)
White		121 (97.6)
Black or African American		2 (1.6)
American Indian/Alaskan Native		1 (0.8)
Care partners who are veterans (N = 128)		7 (5.5)
Care recipients who are veterans (N = 127)		29 (22.8)
Care recipient living situation (N = 126)
Live in own home		85 (67.5)
Live with a relative		33 (26.2)
Live in a long-term care facility		6 (4.8)
Live in a group home		2 (1.6)
Care partner education (N = 127)
Bachelor’s degree or higher		68 (53.5)
Associate’s degree		15 (11.8)
Some college		44 (34.7)

Care Recipient Ability to Perform Oral Health Care

The primary reasons for the care recipient needing care included dementia/Alzheimer’s disease (53.5%), long-term physical conditions (45.7%), emotional or mental health concerns (9.3%), and short-term physical conditions (7.7%). Approximately one third (38.6%) of care recipients were reported by their caregivers as always being able to perform brushing or flossing on their own; 30.3% could usually do this; 21.2% were sometimes able to; and 9.8% never could. Approximately a third (30.6%) of caregivers indicated that they provide hands-on oral care for their care recipient. Of these, 34.1% responded that providing oral care for their care recipient was easy; 24.4% indicated that doing so was difficult; and 26.8% found it to be neither difficult nor easy.

Care Recipient Oral Health Problems

Care partners indicated that the main oral health problems reported for their care recipients in the past 12 months include difficulty eating or chewing (35.6%), dry mouth (34.1%), toothaches or sensitive teeth (23.3%), and bad breath (20.7%). Other problems that were reported less frequently included decayed teeth or cavities (17.9%), swollen gums (12.7%), and bleeding gums (9.7%). In addition, approximately 22% of caregiver respondents reported the use of denture soak by their care recipient indicating significant tooth loss/denture use across the sample.

Care Partner Attitudes and Knowledge About Oral Health

Most care partners (80.8%) disagreed or strongly disagreed that “brushing teeth is a very personal thing that you should not be expected to do for somebody else.” The majority, 96.2%, agreed or strongly agreed with the importance of regular brushing. They also viewed oral care as a care partner responsibility (65.9%) though a number of respondents (21.6%) indicated that they did not see keeping their care recipient’s teeth clean as part of their responsibility or felt neutral about that responsibility. Only 11.4% believed it was best to wait for oral health problems to arise before seeking dental care.

A small proportion of care partners (7.6%) admitted they wouldn’t know how to handle a dental emergency for the person they’re caring for, and 9.8% were neutral to this question. A similar percentage of caregivers expressed doubt about their ability to prevent gum disease (10.6%) or tooth decay and cavities (10.0%) in their care recipients. Over half of the care partners (56.4%) felt they were spending the right amount of time on their care recipient’s oral hygiene, whether it was brushing teeth or cleaning dentures. However, some, (20.5%) weren’t sure if they were doing a good job with brushing.

Care Recipient Access to Dental Care and Utilization

Approximately a quarter of care recipients did not have a dentist, and nearly half of care partners reported that their care recipient has not visited a dental clinic in the past 12 months, as shown in Table 2.

Table 2.

Access to and Use of Dental Care.

Variable	n	%
Care recipient access to dental (N = 135)
Care recipients without a dentist	35	25.90
No dental visit w/in last 12 months	61	45.2
Reasons cited for a lack of care (N = 36)
Infrequent dental care needs	10	27.78
Inability to afford care	10	27.78
Fear or apprehension	7	19.44
Dentures/no natural teeth	6	16.67
Dental services received in last 12 months (N = 74)
General exams	63	85.10
Cleanings	57	77.00
X-rays	29	39.20
Emergency treatments	5	6.80
Root canals	2	2.70

Respondents were also asked about their comfort in participating in oral health discussions with members of the healthcare team, including dental health providers and healthcare providers. Statistical testing was used to identify the relationship between oral health access and comfort in having oral health conversations.

The vast majority of care partners feel very comfortable speaking about their partner in care’s oral health concerns with healthcare and dental care providers (93.2% and 97.7%, respectively). Care partners also indicated they were mostly comfortable talking about oral health with their partner in care (95.5%). Despite comfort in discussing oral health concerns with healthcare providers, only 34.3% of care partners indicated that they had discussed their care recipient’s oral health concerns with such a provider (like a primary care provider or nurse practitioner) in the last year.

A significant relationship was observed, based on t-test results, indicating that care recipients with a dentist were more likely to have visited 1 in the past year (M = 0.71, SD = 0.456; t(96.15) = 9.43, P < .001). Care partners felt more comfortable discussing dental issues with healthcare providers when care recipients lacked dental coverage (M = 1.23, SD = 0.426; t(96.62) = −1.99, P = .049), although they were less likely to report having engaged in such conversations about dental problems within the last year (M = 0.23, SD = 0.426; t(78.77) = −2.20; P = .031). Care partners who felt they have a role in preventing tooth decay were more likely to report an oral health visit in the last 12 months for their care recipient, (M = 0.75, SD = 0.438; t(84) = −2.66, P = .009). Results showed (n = 133) that 82% of care partners did not delay getting dental care that was perceived as necessary by the care partner or a dental professional. Main reasons cited for delays included the care recipient’s fear or nervousness, inability to afford care, and other reasons.

Care Partner Dental Health Practices

The vast majority (90.6%) of care partner respondents indicated that they have their own dentist for their dental care, and 83.5% reported having visited a dentist within the last year. Among those without a regular dentist (9.4%), the reasons varied: 38.5% cited affordability as a barrier to care, while 30.8% indicated “other” reasons, which included financial concerns, having dentures, or not being able to find a dentist accepting new patients. Additionally, 30.8% reported feelings of nervousness, fear, or dislike toward visiting the dentist.

Care Partners’ Education and Training Preferences

Most care partner survey respondents expressed interest in learning more about oral health care for their care recipients, with 58.2% reporting being somewhat interested and 16.4% being very interested. Training topics identified, in order of interest, included: (1) impact of medications on oral health, practical solutions for addressing oral health issues, identifying oral health problems that care recipients may not disclose, determining when to monitor versus when to act on an oral health concern, and managing challenging behaviors during oral care.

Most care partners (61.5%) preferred online, self-paced training for oral health care, allowing them to learn on their own time. Over a third (34.6%) preferred a blended online and in-person option with a set schedule. Other preferences included: online group sessions (25.4%), 1-time in-person meetings (16.9%), and multi-week in-person sessions (4.6%). Only a small number (6.2%) chose “other” options or indicated no interest in training.

Nearly all care partners (95.3%) reported having internet access, primarily through personal laptops or computers (86.0%) and smartphones (63.9%), with fewer using tablets (9.8%) or accessing the internet at libraries or community centers (2.5%). Over half (57.8%) found it very easy to use a device to access the internet, while only 0.9% reported difficulty. In addition, respondents expressed a preference for paper handouts or printed materials (57.4%), interactive online websites (51.2%), online recordings (47.3%), and web-based documents or PDFs (40.3%).

Care partners highlighted several priorities for educational programming. The most important factors included being low-cost or free (71.9%), self-paced (66.4%), and offering flexible timing (49.2%). Additionally, respondents valued opportunities for interaction, whether with other care partners (32.8%) or the instructor (31.3%). Support from employers to participate in these programs was also considered important by a notable portion of respondents (35.9%).

Open-Ended Responses

Survey respondents were invited to offer their own comments and reflections on oral health issues. A significant number of write-in responses touched on the challenges of helping their care recipient with oral health care in the face of progressive memory loss. Of note are the challenges of getting their loved one out into the community for a dental appointment or the burden of adding to an already complex care and appointment schedule:

. . . as a caregiver- adding a dental appointment to a slew of doctor appointments/lab tests/PT feels daunting. It’s hard to get her and I ready and out the door.

I know other caregivers who really struggle with helping a person living with dementia or intellectual disabilities manage oral care, especially going to the dentist. Dentists aren’t all comfortable in these situations either.

Numerous write-in responses regarding denture care for the care recipient reflected some of the challenges in maintaining the dentures themselves and focusing on comfort and ease of wearing. Respondents shared that there is a general lack of awareness and training on denture upkeep for care providers, and the consequences of poor fit such as discomfort or sores in the mouth.

As people live longer, I think my mother stopped worrying about her teeth around 75 thinking she wouldn’t live longer than 5 years or so. She will be 99 in July and her teeth (she has partial denture[s]) are now loose from gums and make it hard to have a good variety of diet.

My mother has had dentures for 50 years and has never gone to the dentist (that I am aware). Now she has Alzheimer’s and does not regularly clean her dentures (or even regularly take them out. . .like when going to bed). I am wondering, given all the other challenges and challenging behavior, how much I should worry about dental care – which battles to choose if you will.

Common themes that emerged in the write-in responses were issues of cost of care for older adults, challenges in physically getting to a dentist’s office, anxiety, and apprehension in visiting a provider, and feelings of pain or discomfort which are also tied to anxiety and apprehension.

Appointments are too long but need a dentist to call upon when needed. . .He [the care recipient] stopped going for regular cleaning because of the costs. Now it’s fear-based and anxieties.

It would be wonderful if dental practitioners came to the home. Difficult to get some elderly (due to mobility issues) to the dentist.

. . .it can be expensive. Finding a dentist or endodontist who will take Medicaid is almost impossible. A budget for an older adult does not necessarily allow for private dental insurance. When I first started caring for my mother, she had multiple dental problems. She had not seen a dentist in years. The issues were fixed, but the cost was out-of-pocket. Something needs to be done to help older adults to have dental coverage through insurance.

Discussion

This study found that care partners often lack the awareness, knowledge, training, and resources necessary to effectively maintain or support their loved ones’ oral health. Oral health education programs, coupled with improved access to healthcare, community initiatives, and affordable services, are crucial.³⁰

Despite caregivers’ positive attitudes toward oral health and their role in its provision, a significant gap existed between this understanding and care recipients’ dental visit frequency. This discrepancy was attributed to access barriers like lack of dental insurance and providers. Limited access was negatively correlated with caregiver comfort discussing oral health, and recipient dental visit likelihood. This correlation, highlighting access limitations hindering care, aligns with literature emphasizing care partner engagement for improved health outcomes.^31-33 Addressing these barriers is crucial for older adult well-being.^1,34

Dental service access remains a significant challenge. Although Medicaid provides coverage for low-income adults in many states, including Maine, those with slightly higher incomes face limited options, including Veterans Dental Network, non-profit dental centers, Community Health Centers with sliding scales, and dental school clinics. Medicare users, including many older adults who rely on Medicare as their main form of coverage, often lack dental coverage.³⁵ These access barriers emphasize the crucial role of care partners in providing oral health care and aiding access.

Many caregivers surveyed reported limited communication with healthcare providers about oral health. The MOTIVATE at Home program, and similar educational efforts, can empower caregivers to initiate these conversations, improving care coordination and outcomes. Given the link between oral and overall health,^8,9 healthcare providers’ role in oral health is crucial. This study found a strong correlation between dental access and care partner comfort discussing oral health with healthcare teams. Care partners with regular dental visits reported higher comfort levels than those whose care recipients lacked recent dental care. This highlights the crucial role of caregivers as oral health advocates. Empowering care partners through support and education is essential, especially given older adults’ dental access limitations. The MOTIVATE at Home program addressed this with an educational tipsheet promoting caregiver-provider conversations.

Meeting the Educational Needs of Care Partners: A Multifaceted Approach

Care partners expressed a need and desire for education and training regarding their role in providing oral health care to their care recipients. The statistical linkage between caregiver beliefs and access to oral health care for their partners emphasizes the importance of focusing educational interventions on strengthening caregivers’ understanding of their influence on oral health outcomes. Care partners identified several key preferences for educational programming, emphasizing the importance of low-cost or free options, self-paced learning, flexible timing, and opportunities for interaction with other caregivers.

Given that over a quarter of caregivers found hands-on care challenging, instruction in these areas is crucial to address the identified geriatric dental care information gap.³⁶ The preference for online, self-paced training highlights the need for flexibility and comfort with technology-based learning. The interest in blended online/in-person sessions suggests a desire for both flexibility and structured interaction. These findings collectively underscore the importance of designing flexible, accessible, and affordable oral health education programs that cater to diverse learning preferences and address the specific needs of care partners.

Furthermore, care partner education should focus on dispelling common oral health myths, creating tools to teach care partners how to talk to their primary care provider, and where to find dental care if access is a barrier. The format of such training should be carefully considered to align with learning preferences and demographic characteristics of this target audience. Given that a third of the sample had a high school education or less, content should be presented at an appropriate comprehension level. Offering a variety of formats, such as handouts, podcasts, and short videos, is essential to cater to diverse learning styles. A flexible, self-paced online modality is highly desirable along with an option for in-person meetings or discussions for those who prefer interactive and social learning.

Oral health education must be tailored to caregiving contexts. As many care for independent, self-managing, and/or individuals with memory loss, curriculum should emphasize oral health prompting, appointment management, behavioral issue management, and memory loss care. Oral health education should focus on care recipients’ common oral health issues: eating/chewing difficulties, dry mouth, toothaches/sensitivity, and bad breath. Based on care partner preferences, additional foci include prompting oral hygiene/dental visits, denture care, and memory loss care strategies.

It is important to note several study limitations. These limitations include potential selection bias from convenience sampling via aging organizations and online platforms, possibly favoring engaged or tech-savvy participants, thus limiting generalizability to other caregivers. The sample’s predominantly female, white, and highly educated composition further limits generalizability to care partners of diverse backgrounds, men, and those with lower education.

Conclusion

Oral health plays a significant role in maintaining overall health. For vulnerable older adults, the risks to overall health when oral health is overlooked are great. Care partners can support oral health of older adults, but there exists a lack of oral health literacy. The MOTIVATE at Home program aims to equip care partners to effectively manage older adults’ oral health through multimodal education and communication among care partners, recipients, and healthcare team members, while integrating caregiver preferences. Survey data provided insight into care partner education preferences and experiences managing oral health. Findings were used to help shape the curriculum development for the MOTIVATE at Home program which is currently undergoing program evaluation. Practitioners are encouraged to use these needs assessment findings to inform their own future oral health educational efforts for this target population and strengthen conversations about oral health with the healthcare team, especially in light of high self-reported confidence in having oral health conversations with healthcare providers, but a lack of such conversations taking place in the health and dental health setting.

Footnotes

Acknowledgements

The authors wish to acknowledge the contributions of the Southern Maine Area Agency on Aging and the MOTIVATE at Home Caregiver Ad Hoc Advisory Committee members who provided ongoing support and advisement during survey development and data analysis phases of this work. The authors also wish to acknowledge Tara Wilson for manuscript preparation support and her role in MOTIVATE at Home program development.

ORCID iD

Jennifer A. Crittenden

Ethical Considerations

The Massachusetts General Hospital Institutional Review Board reviewed project protocols and determined that it did not meet the criteria for human subject research as defined by Mass General Brigham Human Research Office policies and Health and Human Services regulations set forth in 45 CFR 46.

Consent to Participate

Not applicable.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The MOTIVATE at Home Program is funded, in large part, through a grant from the CareQuest Institute for Oral Health. Additional funding was provided by the Lunder-Dineen Health Education Alliance of Maine, a program of Massachusetts General Hospital.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

Data is available upon request from the corresponding author, JC.

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