The Role of Health Literacy in Caring for Dementia Patients

Kayla Demiar

The University of Texas at Arlington College of Nursing and Health Innovation

ROLE OF HEALTH LITERACY 2

Literature Review

A careful review of literature has been completed to fully capture the importance of

further training of caregivers of patients living with dementia. Multiple resources were reviewed

to reveal the role that health literacy holds while caring for patients living with dementia. The

reviewed literature fully identifies the importance of health literacy and its effect on patient

outcomes. The literature focuses on caregivers and their perspectives on communication with

patients living with dementia, as well as their resources provided to them. The literature also

discloses the interventions completed in the past to improve communication between caregivers

and their patients.

The Role of Health Literacy in Caring for Dementia Patients

Alzheimer’s disease along with other forms of dementia effect individuals on a global

scale along with their families, friends, and other loved ones. The commonly known symptoms

associated with several forms of dementia include severe memory loss, which may inhibit a

person from completing their daily tasks and may even alter an entire personality. Dementia is

commonly misunderstood with being a separate condition from Alzheimer’s disease. Dementia

covers a range of medical conditions caused by abnormal brain changes including Alzheimer’s

disease (Alzheimer's Association, 2020). Several forms of dementia are progressive and

gradually worsen. There is not a single test to identify dementia or to determine whether an

individual has dementia. Doctors assess patients by reviewing their medical history, laboratory

evaluations, review their cognitive characteristics and their daily functioning along with a

physical examination (Alzheimer’s Association, 2020). Due to the nature of the symptoms

gradually worsening, it is important for caregivers and other loved ones to become familiar with

the early signs of dementia detection.

ROLE OF HEALTH LITERACY 3

The literature regarding health literacy of dementia patients’ caregivers has revealed gaps

in the cultural competency, the patient-centered care, and the accessibility of information that

caregivers are provided. Health literacy refers to the better understanding and application of

information that involves health-related issues (Rostamzadeh et al., 2020, p. 47-55). There are

also several resources in which caregivers may receive support. However, the literature currently

depicts a lack of awareness of such resources. It would then be of great importance for the health

care system to ask how health literacy plays a role in the care of dementia patients. Poor health

literacy among caregivers is a large component to providing proper care to a patient with

dementia along with providing proper supportive resources. There are several articles that define

the types of literacy and the most appropriate communication of health literacy that would be

facile to those who encounter communication barriers. The tools given to caregivers through

additional communication trainings can impact the needs of patients and their caregivers affected

by dementia.

Health Literacy

In an article by the Journal of Wound Ostomy Continence Nursing (JWOCN), a

descriptive secondary analysis was completed in 2016 to examine the barriers to communication

with health care professionals and health literacy among caregivers of individuals with dementia.

The sample of subjects included 48 family or friends that assumed the role of caregivers for

individuals of Alzheimer’s disease. The data was collected through focus groups, written

surveys, and interviews. Interviews that contained verbal responses were audiotaped or

transcribed and analyzed for themes by using content analysis. Caregivers found that role-related

issues proved to be the barriers to improving health literacy about specific conditions and were

unable to properly care for the people with dementia (Mullins, Bliss, Rolnick, Henre, & Jackson,
ROLE OF HEALTH LITERACY 4

2016, p. 539-544). The study concluded that specialists must assume the important role to raise

health literacy among caregivers of individuals living with dementia. The study emphasizes the

national health literacy initiatives desire to develop interventions that are specifically tailored to

the types of caregiver treating their patients to improve outcomes.

In a study by Kobylarz, Pomidor, & Pleasant (2010), it is discussed that health literacy

should be a tool to improve the public’s understanding of Alzheimer’s disease, which will in turn

provide more understanding for informal caregivers. Higher health literacy levels enable

caregivers to find, understand, evaluate, and communicate health information to their patients.

The article also emphasizes that through better knowledge of health information, caregivers

would be able to make more informed decisions for their patients, which would then reduce

health risks, reduce inequities in health care, and would increase the quality of life for both

themselves and their patients. By providing better knowledge of dementia to caregivers and first

responders, early detection of the disease will be easier to identify. The article suggests that an

effective strategy is to ethically and equitably lower all health literacy barriers for patients and

their caregivers by providing simple communication trainings (Kobylarz, Pomidor, & Pleasant,

2010, p. 34-40). Lastly, the article focuses on the importance of the health care systems

accommodating people belonging to the lay audience by providing information needed to make

appropriate health decisions.

Caregivers

The Pittsburgh Regional Caregivers Survey (PRCS) was conducted through a cross-

sectional analysis to demonstrate the difficulty in resource navigation by caregivers. It was

revealed that the needs focused on the caregiver and their ability to locate resources and arrange

for supportive services for the recipient of care. In the United States, a fifth of the caregivers in
ROLE OF HEALTH LITERACY 5

the nation demonstrated low health literacy levels in 2018 (Fields, Rodakowski, James, & Beach,

2018). Without having the proper knowledge or being misinformed about the different forms of

dementia, patients may lead lives without a proper diagnosis or may be delayed in receiving a

diagnosis. Patients with dementia may also experience worsening of symptoms or may have a

deferral of treatment without their caregivers properly communicating information (Loi &

Lautenschlager, 2015). Caregivers are the first to respond to dementia patients’ needs and may

greatly benefit from a training aimed at achieving better communication in a health literate

manner. As dementia mainly affects the elderly population, their caregivers tend to be their adult

children or grandchildren or other family members. The importance of communication weighs

heavily on caregivers and their daily interactions with their patients with dementia. Health care

provider communication and navigation of services and supports (HCNS) were reviewed through

self-reported questions on communication needs. By improving the caregivers understanding of

communication in a health literate manner it is expected that patient outcomes will improve.

Another study conducted by Bliss, Mullins, Rolnick, Henre, & Jackson (2014)

investigated the health literacy needs related to specific conditions among caregivers of patients

with dementia. The purpose of the study was to propose additional supportive and educational

materials to address the conditions that caregivers may develop throughout their caring for

another individual. The sample included 48 caregivers of whom were family or friends of the

patient with dementia. Interviews were conducted, as well as written surveys and focus groups to

fully assess the health literacy needs of dementia caregivers. The results of the study were similar

to that of the PRCS Survey in that caregivers further expressed their need to understand the

information given to them as the health literacy level, in general, was not high (Bliss et al., 2014,

p. 515-523). The study concluded that the materials developed were suitable to implement into
ROLE OF HEALTH LITERACY 6

interventions to support caregivers of dementia patients. There is considerable evidence that

when comparing both the Pittsburgh survey along with the study by Bliss et al., that caregivers

have expressed the need and importance of obtaining a higher health literacy level when caring

for their patients.

Previous Interventions

A popular website for information about Alzheimer’s disease and other forms of

dementia is the Alzheimer’s Association official site. The Alzheimer’s Association is the largest

voluntary health organization that focuses on the care of Alzheimer’s patients and their support

along with providing further research (Alzheimer’s Association, 2020). Their official site

provides definitions, causes, prevention, and treatment information. Alzheimer’s disease and

other forms of dementia are public health issues and are rated to be underrecognized threats in

the 21st century (Alzheimer’s Association & Centers for Disease Control and Prevention, 2018).

The website also provides helpful resources and support for caregivers and patients, highlighting

the research involved within the organization, and tips on how to get involved in the community.

While websites like these are available to the public, information presented may not be clearly

understood by members of the lay audience.

The Alzheimer’s Association and the Centers of Disease Control and Prevention (CDC)

presented a third series in the Healthy Brain Initiative, which emphases is on the advancement of

cognitive health as it is a vital role in public health. The series focuses on how public health can

further facilitate access to evidence-based services, programs, interventions, and other support

systems to improve overall health. It is mentioned in the series how caregivers would greatly

benefit from either expanding their knowledge base or by being provided easy-to-use resources

to enhance their own health while caring for their patients. The Alzheimer’s Association and
ROLE OF HEALTH LITERACY 7

CDC have collected data that is specific to state and local areas by prioritizing each area’s unique

needs (Alzheimer’s Association & Centers for Disease Control and Prevention, 2018). However,

the series further reveals that there have been plans in place to create interventions to strengthen

the communication between caregivers and their patients but have yet to be implemented.

Conclusion

The review of literature from multiple resources that focus on health literacy, caregivers,

and previous interventions reveal that the role of health literacy among those caring for dementia

patients is of upmost importance. Through proper trainings, organizations similar to that of the

Alzheimer’s Association, and an improved public health agenda, caregivers may then have the

opportunity to improve their loved one’s outcomes by simply becoming aware and informed. By

having structured trainings of detailed information, caregivers may also have the ability to detect

the onset of dementia earlier. After a review of the literature, it has also been found in multiple

sources that caregivers long for the needed awareness about available sources. The

aforementioned studies provide helpful resources to support caregivers of dementia patients.

However, without a complete understanding of the information, caregivers are not fully equipped

to utilize those resources.

The conclusions of the aforementioned studies indicate a need for improved training for

caregivers and for implementation of trainings focused on health literacy among caregivers.

There is also evidence there has been no previous emphasis on specific training towards

caregivers of dementia patients (Alzheimer’s Association, 2020; Alzheimer’s Association &

Centers of Disease Control and Prevention, 2018). As caregivers are the first to respond to the

needs of a dementia patient, further health literacy training is a necessity. Caregivers would

greatly benefit from specialists and clinicians providing more awareness of the current resources
ROLE OF HEALTH LITERACY 8

available specifically designed for caregivers. It is evident that support and information should

not just be conveyed to the patient living with dementia but for the individuals caring for the

patient.
ROLE OF HEALTH LITERACY 9

References

Alzheimer's Association. (2020). What is dementia? Retrieved from

https://www.alz.org/alzheimers-dementia/what-is-dementia

Alzheimer’s Association, & Centers for Disease Control and Prevention. (2018). Healthy brain

initiative, state and local public health partnerships to address dementia: The 2018-2023

road map. Retrieved from https://www.alz.org/media/Documents/healthy-brain-initiative-

road-map-2018-2023.pdf

Bliss, D., Rolnick, C., Jackson, J., Arntson, C., Mullins, J., & Hepburn, K. (2014). Health

literacy needs related to incontinence and skin damage among family and friend

caregivers of individuals with dementia. Journal of Wound, Ostomy and Continence

Nursing, 40(5), 515-523. doi:10.1097/WON.0b013e3182a3ff24

Fields, B., Rodakowski, J., James, A. E., & Beach, S. (2018, December). Caregiver health

literacy predicting healthcare communication and system navigation difficulty. Retrieved

from https://www.ncbi.nlm.nih.gov/pubmed/30148377

Kobylarz, F. A., Pomidor, A., & Pleasant, A. (2010). Health literacy as a tool to improve the

public understanding of Alzheimer’s disease. Annals of Long-Term Care, 18(1), 34-40.

Loi, S. M., & Lautenschlager, N. T. (2015). Dementia literacy in older adults. Asia Pac

Psychiatry, 7(3), 292-29

Mullins, J., Bliss, D., Rolnick, S., Henre, C. A., & Jackson, J. (2016). Barriers to communication

with a healthcare provider and health literacy about incontinence among informal

caregivers of individuals with dementia. Journal of Wound Ostomy Continence

Nursing, 53(5), 539-544. doi:10.1097/WON.0000000000000263

ROLE OF HEALTH LITERACY 10

Rostamzadeh, A., Stapels, J., Jünger, S., Genske, A., Woopen, C., Haidl, T., … Jessen, F. (2020).

Health literacy in individuals at risk for Alzheimer’s dementia: A systematic review. The

Journal of Prevention of Alzheimer's Disease, 7(1), 47-55.

doi:10.1016/j.jalz.2018.06.1228