Uncovering nutrition needs in dyads of caregivers and persons with dementia

Abstract

Background

Nutrition risk is common in Alzheimer's disease and is associated with symptoms of dementia, cognitive decline, institutionalization, and mortality. Family caregivers who increasingly manage nutrition needs of persons with dementia (PWD) experience high caregiver burden, low health literacy, and nutrition risk. Few interventions for informal caregivers have included nutrition.

Objective

To inform design of a future caregiver nutrition intervention.

Methods

This cross-sectional study used a convergent mixed methods approach to 1) assess nutrition status among PWD and caregiver dyads (measures in common included Mini Nutrition Assessment, skin carotenoid, and handgrip strength), and 2) interview caregivers to identify needs and barriers for nutrition intervention. We hypothesized caregiver nutrition literacy is associated with PWD nutrition risk. Data collected in nutrition assessment and interviews were analyzed separately then side-by-side for comparison.

Results

Of 50 dyads, 48% had at least one individual exhibiting nutrition risk, and nutrition status categories (χ²= 6.25, p = 0.012) between caregivers and PWD were related. Caregiver nutrition literacy was associated with 1) PWD factors including nutrition risk (rho = 0.244), body mass index (BMI) (rho = 0.421), handgrip strength (rho = 0.283), and skin carotenoid (rho = 0.351), and 2) Caregiver factors including nutrition risk (rho = 0.304), diet quality (rho = 0.304), and BMI (rho = 0.333). Interviews with 18 caregivers found caregivers prioritize PWD nutrition, provide more PWD nutrition care since diagnosis, experience social isolation, and would attend nutrition interventions if PWD are included.

Conclusions

Nutrition risk was more common among caregivers when PWD demonstrated nutrition risk. Factors present in individuals within the dyad were associated with partner nutrition risk. Future research should identify effective approaches for intervening on dyadic nutrition risk.

Keywords

Alzheimer's disease caregiver functional status health literacy malnutrition nutrition literacy

Introduction

More than 11 million people in the US provide 26.3 h on average per week of unpaid care to persons with dementia (PWD), placing substantial burden on family caregivers.¹ While many consider caregiving a rewarding role, nearly 60% of PWD caregivers rate the emotional stress of caregiving as high or very high,¹ and a review of 45 systematic reviews found “clear support” that being a PWD caregiver increases risk to psychological and physical health.² Among these health risks, limited data suggest between 20–64% of caregivers of PWD experience malnutrition or are at risk for malnutrition (also known as “nutrition risk”).^3–5 Nutrition risk arises from inadequate nutrient intake leading to loss of lean tissue, with or without loss of subcutaneous fat, and resulting in decreased functional status and quality of life and increased frailty, institutionalization, morbidity and mortality.^6,7

Beyond preventing malnutrition, a healthy diet is foundational to well-being and a key factor preventing nutrition-related chronic disease and cognitive decline.⁸ However, caregivers often forego self-care due to caregiving activities and prioritization of the PWD's health.⁹ In fact, PWD nutrition and feeding issues are chief concerns for caregivers who assume multiple tasks associated with feeding.^10,11 In one telehealth intervention where caregivers submitted video recordings of challenging care situations for expert feedback, eating challenges were among the top five topics for which caregivers sought help.^12,13 These concerns are well justified since malnutrition occurs in an estimated 29–54% of PWD, and unintentional weight loss alone is associated with decreased quality of life, Alzheimer's disease progression, institutionalization, and mortality.^4,11,14,15 Managing responsibilities for meeting the nutrition and feeding needs of PWD may negatively impact caregiver nutrition. Some caregivers have reported feeling guilt in balancing food decisions between their PWD's nutrition needs that are in conflict with their food preferences, feeling a loss in the emotional significance of mealtimes, feeling unappreciated and undervalued, and engaging in emotional eating.^11,16 Thus, a dementia diagnosis can have detrimental effects on nutrition for both PWD and caregivers.¹¹

It is unclear what caregiver factors are associated with PWD nutrition risk and how well-equipped family caregivers are to navigate the role in meeting their own nutritional needs and supporting the nutritional needs of the PWD. It is estimated that 65–75% of caregivers have inadequate health literacy, effectively decreasing their ability to make informed health-related decisions.¹⁷ Low health literacy among caregivers is associated with lower care ability, higher hospitalization rates, longer lengths of stay, and poorer self-care.¹⁷ To our knowledge, nutrition literacy has not been studied among caregivers of PWD, but research on care abilities of caregivers suggests a relationship may exist with PWD nutrition outcomes. In one study, caregivers recognized only severe malnutrition,¹⁸ and another reported caregivers with high burden had PWD with significant weight loss at 3 months follow up.¹⁹ Outside of the dementia caregiving context, nutrition literacy predicted a healthy, Mediterranean-style diet in adults with nutrition-related chronic disease, and caregiver nutrition literacy was associated with higher quality diets in young children.^20–22

Given these nutrition risks experienced by PWD and caregivers, it is surprising that few nutrition interventions directed at caregivers have been reported. Those involving dementia caregivers were focused on nutrition outcomes of the PWD and did not report nutrition outcomes of caregivers.^16,23,24 Thus, the overall purpose of this study was to inform the design of a future nutrition intervention inclusive of caregiver desires. The objectives of this study were to test the hypothesis that caregiver nutrition literacy is related to PWD nutrition status, and to identify 1) caregiver characteristics that are related to PWD nutrition status, and 2) the nutrition-related needs, barriers, and facilitators of caregiver-PWD dyads.

Methods

Study design

This cross-sectional study used a convergent mixed methods approach using both quantitative data collected from caregivers and PWDs and qualitative data collected from caregivers through surveys and formal interviews to address study objectives.²⁵ All data were collected between November 2022 and December 2023.

Setting and participants

Participants were recruited by the Outreach, Recruitment, and Engagement core at the University of Kansas Alzheimer's Disease Research Center (KU ADRC) using various outreach methods (patient registry, community registry, ADRC cohort participants, social media posts, and word of mouth). Interested participants had two opportunities for participation: 1) Nutrition status assessment and 2) Caregiver interviews. Contact information of interested individuals was shared with the research team for eligibility screening. Eligibility and participant interest were collected via phone calls by a trained research team member.

Participation in the nutrition status assessment portion required eligibility of the dyad, including both the caregiver and the PWD. Inclusion criteria for PWD were adults diagnosed with Alzheimer's or related dementia, residing at home with a caregiver or domestic partner, and weight recorded in the medical record in the previous year. PWD were excluded if they had frontotemporal dementia, alcohol-related dementia, Huntington's disease, schizophrenia, manic-depressive disorder, or active participation in nutrition intervention research. Inclusion criteria for caregivers were 18 years or older, English speaking, primary caregiver responsible for food planning, and no clinical cognitive impairment. All physical measures were collected in person at the ADRC and self-administered surveys were collected in person or online (per participant preference), requiring only one in-person visit to the research facility. Caregivers and PWD each received $50 for their participation.

All caregivers participating in the nutrition status assessment portion were invited to participate in interviews. Interviews were performed using a University-issued HIPAA compliant Zoom account with user-specific authentication, encryption, and securely stored audio recordings (Zoom Video Communications, Inc, 2023). Caregivers received $25 for the interview.

Ethics

All study procedures were approved by the University's Institutional Review Board (IRB). Informed consent was collected from all participants or their legally authorized decision-makers. Surrogate decision-makers, who were legal guardians, signed informed consent on behalf of PWD, and PWD signed assent. This trial was registered at ClinicalTrials.gov (NCT05536830).

Quantitative measures collected among caregivers and PWD

The following quantitative measures were collected in either the caregiver, PWD, or both. Table 1 summarizes the measures that were collected from the dyad and measures that were collected in the caregiver or PWD only.

Table 1.

Quantitative measures collected among the dyad of caregivers/persons with dementia (PWD).

	Measure
Dyad	Mini Nutrition Assessment²⁶ Skin Carotenoids²⁷ Handgrip Strength²⁸
Caregiver Only	Caregiver Characteristics Survey Nutrition Literacy²⁰ Healthy Eating Index-2015^29,30 Modified Caregiver Strain Index³¹
PWD Only	PWD Characteristic Survey (completed by caregivers) Functional Assessment of Staging Alzheimer's Dementia³²

Demographic characteristics of the dyad

Caregivers completed a demographic survey to self-report biological sex, age, education, race, ethnicity, marital status, household income, employment status, relationship to PWD, years spent caregiving, and hours spent caregiving per week. Caregivers also completed a survey to report demographic characteristics of PWD including biological sex, age, education, race, ethnicity, and marital status.

Nutrition status of the dyad

Nutrition status was measured in both the caregiver and PWD using the 18-item Mini Nutrition Assessment (MNA, full version). The MNA is a validated 18-item tool for identifying malnutrition in older adults, comprised of anthropometric measures, nutrition-related lifestyle questions, dietary intake, and self-perceived health.²⁶ Scoring is as follows: Normal (24–30 points), At risk of malnutrition (17–23.5 points), or Malnourished (<17 points). Use of the MNA is recommended for malnutrition assessment in community-dwelling older adults by the Academy of Nutrition and Dietetics and for PWD by the European Society for Parenteral and Enteral Nutrition.^15,33 As part of the MNA, height (to nearest 0.01 cm) and weight (to nearest 0.1 kg) were measured by trained research dietitians using a stadiometer and calibrated digital scale. The average of three measures of height and weight were used to calculate body mass index (BMI) (m²/kg).

Skin carotenoids of the dyad

To complement assessment of dietary intake within the MNA, we also measured caregiver and PWD skin carotenoid content as a non-invasive estimate of fruit and vegetable intake. The Veggie Meter^® (Longevity Link Corporation) uses gentle pressure applied to the pad of the fingertip to put in close contact with light to detect and measure carotenoid molecules in the skin. Three, 15–20 s measurements are taken and averaged for the recorded score. This approach is highly correlated with tissue carotenoid content.²⁷

Diet quality of the caregiver

Diet quality of caregivers was assessed through the HEI-2015 using methods developed by the National Cancer Institute.²⁹ Caregivers completed the validated, web based food frequency questionnaire, the Diet History Questionnaire III (DHQ III), to collect diet intake.³⁰ Nutrient data from the DHQIII was used to calculate HEI-2015. Total score for HEI-2015 has a range of 0–100.

Handgrip strength of the dyad

Functional status is a commonly considered criterion in the diagnosis of malnutrition.³⁴ Thus, we measured caregiver and PWD functional status by hand-grip strength using a calibrated Jamar hand dynamometer on the participant's dominant hand.²⁸ An average of three measurements was calculated for caregivers and PWD³⁵ and transformed into z scores using normative standards for age and biological sex previously established with NHANES data.³⁶ Because normative standards range 18–85 years, measures collected in four individuals exceeding 85 years were standardized using the 80–85 year reference values.

Nutrition literacy of the caregiver

We measured caregiver nutrition literacy using the Nutrition Literacy Assessment Instrument (NLit) previously validated in a diverse sample of 429 adults.²⁰ The NLit includes 42-items in multiple-choice format that objectively (i.e., assess knowledge and/or skill) measure six subscales of nutrition literacy: 1) nutrition and health, 2) energy sources in food, 3) household food measurement, 4) food label and numeracy, 5) food groups, and 6) consumer skills. Scores are interpreted as ≤ 28 is “likelihood of poor nutrition literacy,” 29–38 is “possibility of poor nutrition literacy,” and ≥ 39 is “likelihood of good nutrition literacy.”²⁰

Caregiver stress

Caregiver stress and burden was measured by the Modified Caregiver Strain Index (MCSI) in which caregivers self-report perceived strain related to their caregiver roles. Items were scored “yes” (2), “sometimes” (1), or “no” (0); higher scores indicated higher perceived caregiver strain. The MSCI previously demonstrated internal and test-retest reliability in 158 caregivers.³¹

Dementia staging of the PWD

Dementia staging was measured using the Functional Assessment of Staging Alzheimer's Dementia (FAST). FAST is a validated scale composed of 7 major functional levels concerning activities of daily living across the spectrum of Alzheimer's disease.³² Caregivers and PWD were interviewed by a research team member to elicit information concerning ability of the PWD to perform specific activities of daily living. Answers determined the appropriate stage: Stage 1 (normal), Stage 2 (normal older adult), Stage 3 (early dementia), Stage 4 (mild dementia), Stage 5 (moderate dementia), Stage 6 (moderately severe dementia), and Stage 7 (severe dementia).

Caregiver perspectives on nutrition needs

An iterative, mixed methods approach was used to collect the perspectives of caregivers on their caregiving nutrition needs. All caregivers participating in the nutrition status assessment portion of the study completed a 24-item survey that was developed by the research team to solicit feedback from caregivers on their food and nutrition experiences and needs. Topics of questions were based on published interview guides and previous findings^10,37,38 and included caregiver nutrition roles (2 multiple choice items), confidence in performing food-related caregiver roles (10 Likert-scale items), changes in PWD food behaviors since diagnosis (5 multiple choice, 1 short answer), the effect of caregiving on self-care (1 multiple choice, 1 short answer), and eating away from home (4 short answer items). From answers to survey questions, the research team developed an interview guide to further explore select topics in individual interviews with caregivers.

Statistical methods

All measures were analyzed for descriptive statistics (frequencies, means, and standard deviations). Spearman's rank correlation and chi-squared tests were used to investigate relationships between caregiver and PWD measures as well as within caregivers and PWD. To evaluate the role of caregiver biological sex, we used independent t-tests to investigate differences between sexes for caregiver NLit total score, MNA, HEI-2015, BMI, skin carotenoid and PWD MNA, BMI, and skin carotenoid. We assessed all model assumptions using residual analyses, including QQ plots and residual histograms. All quantitative data analysis was performed in SPSS Statistics, Version 27 (IBM Corp., Armonk, NY, 2020) with statistical significance set at p < 0.05 and near-significance set at p < 0.10. Transcripts from all interviews were analyzed using the constant comparative method³⁹ and data triangulation⁴⁰ to identify recurring themes. Three researchers coded transcripts separately and met to discuss major themes. After data were compiled, a side-by-side comparison of nutrition status data, survey data, and interview data was performed.

Results

A total of 50 caregiver-PWD dyads enrolled in the nutrition status assessment portion of the study. Descriptive statistics for demographic and nutrition-related characteristics of caregivers and PWD are presented in Table 2. Most caregivers self-identified as spouses to the PWD (n = 48, 96%) and a slight majority reported female biological sex (n = 28, 56%). Approximately half of PWD had mild dementia, but all stages were represented. Nutrition literacy in caregivers was “possibly poor” on average with a score of 34.8 ± 4.5 points on the NLit. Caregivers had HEI-2015 diet quality scores of 69.2 ± 8.8, which is higher than the median score of 60 for US adults ages 60 years and older.⁴¹

Table 2.

Characteristics of caregivers and persons with dementia dyads (N = 50 dyads).

Characteristic	n (%) or mean (SD)
Caregivers
Biological Sex, n (%)
Male	22 (44)
Female	28 (56)
Education level, n (%)
High school/GED	3 (6)
Some college/Associate's Degree	7 (14)
Bachelor's degree	20 (40)
Graduate degree	20 (40)
Ethnicity, n (%)
Not Hispanic/Latino	41 (82)
Hispanic/Latino	5 (10)
Unknown/Prefer not to answer	4 (8)
Race, n (%)
White	43 (86)
Black/African American	4 (8)
Other	2 (4)
Marital Status, n (%)
Married	50 (100)
Annual Household Income, n (%)
≤$74,999	15 (30)
$75,000–99,999	17 (34)
≥$100,000	17 (34)
Relationship to PWD, n (%)
Spouse	48 (96)
Adult child	2 (4)
Age in years, mean (SD)	72.7 (8.9)
Years of caregiving, mean (SD)	3.67 (3.45)
NLit score	34.8 (4.5)
NLit category
Likelihood of poor (≤28)	3 (6)
Possibility of poor (29–37)	35 (70)
Likelihood of good (38–42)	12 (24)
Mini Nutrition Assessment score	25.4 (2.83)
Mini Nutrition Assessment interpretation
Nourished (24–30 points)	37 (74)
At risk for malnutrition (17–23.5 points)	13 (26)
Healthy Eating Index score (0–100)	69.2 (8.76)
Skin carotenoid score (average of 3)	274.9 (72.38)
Body mass index (kg/m²)	28.5 (4.93)
Handgrip strength (lbs, dominant hand, avg of 3 attempts)
Males (n = 22)	90.09 (26.0)[range 41.7–143.3]
Females (n = 28)	58.4 (11.86)[range 36–78.7]
Persons with Dementia
Biological Sex, n (%)
Male	28 (56)
Female	22 (44)
Age in years, mean (SD)	74.7 (8.29)
Functional Assessment of Staging AD (FAST), n (%)
Mild dementia	26 (52)
Moderate dementia	10 (20)
Moderately severe dementia	10 (20)
Severe dementia	4 (8)
Mini Nutrition Assessment score	23.6 (2.96)
Mini Nutrition Assessment interpretation
Nourished (24–30 points)	30 (60)
At risk for malnutrition (17–23.5 points)	18 (36)
Malnourished (<17 points)	2 (4)
Skin carotenoid score (average of 3)	247.7 (84.75)
Body Mass Index (kg/m²)	26.9 (5.00)
Handgrip Strength (lbs, dominant hand, avg of 3 attempts)
Males (n = 28)	79.71 (22.39)[range 46.0–136.0]
Females (n = 22)	46.1 (19.4)[range 8.67–91.3]

Relationships between caregiver and PWD measures are presented in Table 3. Of 50 dyads, 48% had at least one individual who was malnourished or at risk for malnutrition: 1) Nine dyads with both caregivers and PWD who were malnourished or at risk for malnutrition; 2) Four dyads with only caregivers at risk for malnutrition; and 3) 11 dyads with only PWD who were malnourished or at-risk for malnutrition. PWD MNA was inversely related to FAST dementia staging (rho = −0.33, p = 0.018). MNA scores (rho = 0.40 p = 0.005) and nutrition status categories (χ2 = 6.25, p = 0.012) between caregivers and PWD were related. Caregiver nutrition literacy was related to caregiver MNA (rho = 0.30, p = 0.03), diet quality (rho = 0.30, p = 0.03), and BMI (rho = 0.33, p = 0.02).

Table 3.

Correlation matrix (Spearman Rho) between nutrition-related characteristics in dyads of caregivers and persons with dementia.

		Persons with Dementia measures
		MNA	BMI	Handgrip Strength	Skin Carotenoid
Caregiver measures	Years of Caregiving	0.213	0.145	−0.086	0.249^‡
	MNA	0.395**	0.018	0.077	0.213
	HEI-2015	0.239^‡	0.204	0.049	0.421**
	BMI	0.058	−0.074	0.273^‡	0.057
	MSCI	0.000	−0.074	−0.232	0.210
	Handgrip Strength	0.044	−0.005	−0.045	0.068
	Skin Carotenoid	−0.077	−0.057	−0.077	0.293*
	Total NLit	0.244^‡	0.421**	0.283*	0.351*
	Nutrition & Health	0.233	0.137	0.169	0.286*
	Energy Sources	−0.029	0.164	0.071	0.221
	Household Food Measurement	0.041	0.405**	0.180	0.024
	Food Label & Numeracy	0.055	0.146	0.212	0.186
	Food Groups	0.412**	0.294*	0.326*	0.291*
	Consumer Skills	0.175	0.352*	0.145	0.286*

‡

p < 0.1; *p < 0.05; **p < 0.01.

Comparing nutrition measures between caregivers grouped by biological sex, male caregivers had lower nutrition literacy (−2.8 ± 1.2 NLit score, p = 0.03,), diet quality (−6 ± 2.4 HEI, p = 0.015), and stress (−3.4 ± 1.5 MSCI, p = 0.03) than female caregivers; while their female care recipients had lower BMI (−3.7 ± 1.3, p = 0.008) and worse nutrition risk (−2.5 ± .8 MNA, p = 0.002) than male care recipients. Caregiver MNA was not different between sexes (p = 0.63).

Caregiver survey responses concerning their nutrition-related roles and needs are described in Table 4. Caregiver confidence in performing various nutrition-related tasks was high for both males and females. Male caregivers reported an increased frequency of eating away from home for both caregivers and PWD, while female caregivers reported decreases.

Table 4.

Caregiver responses to survey of caregiving nutrition needs.

Relationship to the person with dementia	n	M	F
Spouse	48	21	27
Adult child (daughter)	2	0	2

Primary food preparer prior to diagnosis	n	M	F
Caregiver	20	7	13
We shared	20	9	11
PWD	8	5	3
Other	2	0	2

How have your food and nutrition-related roles changed since their dementia diagnosis? Check all that apply.	n	M	F
No change	17	6	11
I do the meal/food planning when I didn’t previously	14	6	8
I do the food shopping when I didn’t previously	18	9	9
I am now the main food preparer when I wasn’t previously	19	9	10
I help prepare food more than I used to, but not all our food	11	6	5
I am more concerned about food preparation than I was before	18	11	7
I am more concerned about nutrition than I was before	16	7	9
I started worrying about my care receiver's safety in the kitchen	14	6	8

How confident do you feel in your ability to:(Not at all confident = 1 to Extremely Confident = 5)	Mean Score
	All	M	F
Meal plan	4.2	4.2	4.2
Food shop	4.5	4.5	4.6
Choose healthy and nutritious foods at the grocery store	4.2	4.1	4.3
Prepare foods	4.3	4.3	4.4
Follow a recipe	4.4	4.3	4.4
Prepare a meal in a short amount of time	4.3	4.2	4.3
Prepare nutritious foods	4.2	4.0	4.3
Prepare a nutritious meal without spending a lot of money	4.1	4.0	4.1
Prepare foods your care recipient will eat	4.4	4.1	4.6
Prepare foods that are both nutritious and that your care recipient will eat	4.4	4.2	4.5

Eating Habits Changes in Persons with DementiaHas your care recipient's food behaviors changed in any of the ways listed?	n	M	F
Swallowing problems	12	6	6
Difficulty in swallowing food	2	1	1
Difficulty in swallowing liquids	0	0	0
Coughs or chokes when swallowing	6	3	3
Takes a long time to swallow food or liquids	5	3	2
Places food in mouth but does not chew it	0	0	0
Chews food but does not swallow it	0	0	0
Appetite changes	33	15	18
Loss of appetite	10	6	4
Increase in appetite	10	3	7
Seeks out food between meals	16	6	10
Overeats at mealtimes	6	0	6
Requests larger or second helping of food	4	1	3
Reports hunger	4	2	2
Reports being overfull	4	2	2
Other changes in appetite, such a binges	1	0	1
Needs to limit food intake	4	2	2
Food preferences	29	12	17
Prefers sweet foods more than before	18	6	12
Drinks more soft drinks	5	1	4
Drinks more tea/coffee	5	3	2
“Taste” in food changed in another way (e.g., eats more meat)	7	5	2
Adds more seasoning to their food (e.g., adds more salt)	3	1	2
Developed other food fads	2	0	2
Hoards sweets or other food	5	2	3
Drinks more alcohol	1	1	0
Eating habits	24	10	14
Wants to cook or eat exactly the same foods each days	2	1	1
Tends to eat foods in the same order	3	1	2
Wants to eat at the same time every day	2	1	1
Decline in table manners	9	5	4
Eats with hands	4	4	0
Takes a long time to eat	17	7	10
Other oral behaviors	7	2	5
Tends to overfill mouth	4	2	2
Chews or sucks on things (e.g., pens) without trying to eat them	0	0	0
Eats non-edible foodstuffs or things not normally eaten	1	1	0
Tends to snatch or grasp any food items within reach	2	0	2
Become a heavier smoker or taken up smoking again	0	0	0
Episodes of spontaneous vomiting	1	0	1
Episodes of self-induced vomiting	0	0	0

Eating Away from HomeHow many times per week did you eat meals that were prepared away from home in places such as restaurants, fast food places, food stands, grocery stores, or from vending machines?	Mean Times per Week
	All	M	F
Caregiver prior to dementia diagnosis	2.5	2.5	2.5
Caregiver after dementia diagnosis	2.9	3.6	2.3
PWD prior to diagnosis	2.9	3.0	2.8
PWD after diagnosis	2.8	3.5	2.2

Eighteen caregivers participated in the interview portion of the study. Table 5 includes participant characteristics, themes and exemplar quotes. Interviews found the following 4 themes: 1) Caregivers are focused on the person they care for, themselves last; 2) Caregivers are spending more time on nutrition-related tasks (meal planning, grocery shopping, and mealtimes) for the PWD than prior to the diagnosis; 3) Caregivers experience social isolation and want peer support; and 4) Caregivers would attend in-person support groups if care for the PWD is included.

Table 5.

Caregiver interviewee characteristics, themes, and exemplar quotes (n = 18).

Characteristic	n (%) or mean (SD)
Caregiver Age (years)	69.5 (9.7) (range 52–85)
Caregiver Gender
Female	11 (61)
Male	7 (39)
Relationship to Person with Dementia
Spouse	16 (89)
Adult child	2 (11)
Years caregiving	3.75 (3.2) (range 0.75–15)
Hours per day caregiving	12.2 (8.2) (range 1–24 h)
FAST Dementia Stage (PWD)
Mild dementia	7 (39)
Moderate dementia	4 (22)
Moderately severe dementia	4 (22)
Severe dementia	3 (17)
Primary food preparer prior to dementia diagnosis
We shared tasks	10 (56)
Care recipient	5 (28)
Me	2 (11)
Other	1 (6)
Nutrition Status of Caregiver
At risk of malnutrition	6 (33)
Normal nutrition status	12 (67)
Nutrition Status of PWD
At risk of malnutrition	8 (44)
Normal nutrition status	10 (56)
Dyad Nutrition Status
Both at risk of malnutrition	5 (28)
Caregiver only at risk of malnutrition	1 (6)
PWD only at risk of malnutrition	3 (17)
Both normal nutrition	9 (50)
Themes and Quotes
Caregivers are focused on the person they care for, themselves lastHow has becoming a Caregiver affected your own food and nutrition?Typically, you know as a Caregiver, I've noticed that I just eat here and there. I graze and I don't actually, if I sit down and eat with him, it has to be I'm focused on him to make sure he eats, then my meal gets cold and then I just nibble, so it's changed a lot. -Caregiver28, spouse, female, both at risk of malnutritionHow has your role in food and nutrition changed since their dementia diagnosis?I feel like I'm responsible for all the meals and in some ways, I tend to delegate it more to, you know, to eating out and stuff like that more than I used to. Because other things, it's important to get her dressed in the morning. It's important to have some routine that she goes through. -Caregiver10, spouse, male, both at risk of malnutrition
Caregivers are spending more time on nutrition-related tasks (meal planning, grocery shopping, and mealtimes) for the person they care for than they did prior to the diagnosisHow has your role in food and nutrition changed since their dementia diagnosis?Yeah, that's easy. I am spending almost as much time in the food prep area of our house as she is… And that's four to five times as much time as I did when I earlier retired. -Caregiver16, spouse, male, both normal nutrition statusHow have you coped with changes in your nutrition-related Caregiver roles?Well, I have to spend more time. Encouraging him and I try to be sweet about it because I tend to be a little forceful. And I try to, you know, it's some little bit of a, I wouldn’t say burden, but it's a little bit of concern with me every meal that he gets what he needs to eat. -Caregiver01, spouse, female, both normal nutrition status
Caregivers experience social isolation and want peer supportWhat changes in your nutrition-related roles have affected you socially? And how have these changes influenced you socially?Yeah, you won't even go. Let's see this year he wouldn't even go to Christmas dinner at my brothers at all. He did go Memorial Day to his house, but he didn't want to stay long, so he just doesn't want to be socially around people… I think it's because he doesn't remember things and it makes him uncomfortable. It makes him feel like, you know, people are judging him and they're really not. But he feels like he's used to being a part of everything and now he's so isolated. -Caregiver11, spouse, female, both at risk of malnutritionBetween us, no, it's just him and I, but socially we don't go out to eat at restaurants or holiday meals with family members. -Caregiver28, spouse, female, both at risk of malnutrition
Caregivers would attend in-person support groups if care for the PWD is includedHow do you prefer to receive support?Again, in group setting, it's difficult to be separated from [care recipient]. I attempted to get into a couple of groups, but they were for the Caregivers only, and I didn't like. -Caregiver10, spouse, male, both at risk of malnutritionWhat kind of program would be most helpful for addressing your food and nutrition needs?Maybe question and answers. I don't know if I really have time to actually go to the cooking class. It would have to be something that could be more web based because we care for her like 24 h a day. -Caregiver44, adult child, female, Caregiver at risk of malnutrition, person with dementia normal nutrition statusI guess a support group other maybe other people who have, you know, solutions or ideas about how to how to how to deal with [nutrition issues]. -Caregiver09, spouse, female, both normal nutrition status

Discussion

The results of this mixed-methods study add a dyadic perspective to existing literature on the nutrition status and nutrition needs of informal caregivers and PWD. While rates of malnutrition risk were similar to other studies that investigated caregiver or PWD nutrition risk separately, the present study reports a new finding that approximately half of dyads experienced nutrition risk in at least one member. This dyadic perspective is important because both caregiver and PWD factors were associated with nutrition risk in the respective partner, suggesting bidirectional effects likely impact nutritional status of both individuals and the dyad overall.

Our data also suggest caregiver nutrition literacy is a factor that influences both caregiver and PWD nutrition status. Relationship between caregiver nutrition literacy and diet quality was anticipated based on our previous validation of the NLit tool.²⁰ Higher nutrition literacy was related to higher BMI in both caregivers and PWD. Although both caregivers and PWD had average BMIs classified in the overweight category, evidence suggests overweight BMI in adults ≥65 years is associated with lower mortality risk.^42,43 Caregiver nutrition literacy was the only factor measured in the present study with significant relationships with all PWD nutrition measures. Although nutrition literacy has not been previously measured in caregiver interventions, nutrition literacy interventions generally improve diet quality,⁴⁴ and interventions in PWD that have included caregiver-focused nutrition education have increased PWD nutrition status compared to control.^3,24 Thus, improving nutrition literacy among caregivers may have downstream positive effects on nutrition outcomes for PWD and caregivers.

Results of the present study suggest male caregivers may be less knowledgeable of the nutrition needs of their spouses with dementia. Others have also reported lower nutrition literacy among older adult males compared with females.⁴⁵ Nutrition literacy and diet quality were lower among male caregivers, and male caregivers reported an increased frequency in eating out after the dementia diagnosis. Greater difficulty in meeting PWD nutrition needs by male caregivers has been attributed to acquiring a new food-related role,⁴⁶ however, changes in nutrition-related roles in this study were equally experienced by male and female caregivers. Regardless of cause, these data indicate that male caregivers are an important demographic to engage in the intervention design process, especially considering that nutrition interventions often enroll a higher percentage of females and females are more likely to experience dementia.

The relationship between cognition and malnutrition in the present study is consistent with previous evidence that malnutrition prevalence is higher in those with dementia⁴; however, a lack of causal research has been conducted to investigate the directionality of this relationship. Nutrition risk may predict dementia severity with one study reporting those with malnutrition were four times as likely to reach severe dementia.⁴⁷ Likewise, one systematic review purports poor nutritional status may contribute to a decline in cognition but cites a lack of high-quality studies.⁴⁸ Improving diet quality in older adults with elevated risk for dementia has been shown to benefit cognition.⁴⁹ Thus, it is also reasonable to hypothesize that nutrition interventions may improve or preserve cognitive function in dementia, yet this remains unclear given a limited number of such clinical trials. Since PWD are clearly at a greater risk of malnutrition, future well-powered studies should focus on investigating whether nutritional intervention can improve or preserve cognitive function in those with dementia.

The purpose of the present study was to uncover the nutritional needs of caregivers as they support PWDs to inform future intervention design, but it quickly became apparent in caregiver interviews that they were uninterested in nutrition interventions designed for caregivers alone. Consistent with others’ findings, caregivers prioritized the nutritional needs of PWD over their own.⁵⁰ Even when prompted, many would not acknowledge nor were aware of their own needs. While caregivers expressed feelings of social isolation and interest engaging with other caregivers, they felt they could not participate in a nutrition intervention if they could not bring their PWD along. Results of the nutrition assessment portion of the study complement these findings, highlighting that nutrition risk is more common within the dyad than nutrition risk within caregiver or PWD alone. These findings align with the Actor-Partner Interdependence Model which describes the mutual influences of individual and partner effects to synergistically impact outcomes.⁵¹ Our findings build on others who point to the need for dyadic nutrition intervention for community-dwelling dyads living with dementia to effectively and efficiently meet nutrition needs of both groups.⁵⁰

The strengths of this study include use of validated psychometrics and robust measures of nutrition status conducted in both caregivers and PWD. Our mixed methods approach allowed for triangulation of data to understand the nutritional needs of dementia dyads more deeply than is possible through qualitative or quantitative methods alone. However, our findings also have important limitations. The sample size was relatively small and comprised of mostly high SES, which limits generalizability. Even still, we found high prevalence of nutrition risk among these participants, which is likely higher among the general population of community-dwelling older adults with dementia and their caregivers, given that food insecurity is a major contributor to malnutrition among older adults.⁷ Likewise, although 18 interviews is consistent with recommendations to achieve content saturation, not all perspectives are likely represented. Finally, we used a validated food frequency questionnaire to inform the calculation of caregiver diet quality because this approach minimizes respondent and researcher burden while measuring usual diet intake over a one-year period, however, we acknowledge that self-report methods are prone to bias.

In sum, malnutrition risk was prevalent in this sample of community-dwelling PWD and caregiver dyads. This finding is important because nutrition screening is not currently standard practice in outpatient settings. Furthermore, in a healthcare system that focuses on the patient presenting for care (PWD), the caregiver's nutrition risk is likely hidden. Future research should identify effective dyadic nutrition interventions to increase quality of life for families living with dementia.

Footnotes

Acknowledgments

The research team would like to express our heartfelt gratitude to all research participants who contributed their time and insights to this study. Your willingness to share your experiences and perspectives made this work possible. Special thanks to student graduate research assistants who were integral to data collection for this study including Rachel Archer, MS, RD, Emma Montgomery, MS, RD, and Fernanda Cantu Corona.

ORCID iDs

Heather D Gibbs

Matthew K Taylor

Cheryl Gibson

Rebecca Mount

Austin Sullivan

Kristine Williams

Debra K Sullivan

Author contributions

Heather Diane Gibbs (Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Resources; Supervision; Validation; Writing – original draft); Matthew K Taylor (Conceptualization; Data curation; Formal analysis; Methodology; Writing – original draft); Rebecca Mount (Data curation; Formal analysis; Investigation; Project administration; Supervision; Writing – original draft); Cheryl Gibson (Conceptualization; Investigation; Methodology; Writing – review & editing); Austin Sullivan (Data curation; Investigation; Writing – original draft); Kristine Williams (Conceptualization; Investigation; Methodology; Writing – review & editing); Debra K Sullivan (Conceptualization; Methodology; Writing – review & editing).

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by grants from the National Institute of General Medical Sciences (P200 GM139733) and from the National Institute on Aging awarded to the University of Kansas Alzheimer's Disease Research Center, the University of Kansas School of Medicine, and the Landon Center on Aging (P30 AG072973).

Declaration of conflicting interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Heather Gibbs and the University of Kansas are owners of the NLit copyright and receive royalties for its use. Matthew Taylor received funding from the National Cattlemen's Beef Association (2020–2022) and the Avocado Nutrition Center (2023–2026). Debra Sullivan received funding from the National Cattlemen's Beef Association (2024), the National Pork Board (2024–2025), the Egg Nutrition Center (2020–2023), and the US Highbush Blueberry Council (2021–2024). All other authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability

The data supporting the findings of this study are available on request from the corresponding author.

References

Alzheimer’s Association. 2024 Alzheimer’s Disease Facts and Figures, https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf (2024, accessed 16 December 2024).

Gilhooly

MLM

Sullivan

, et al. A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatr 2016; 16: 106.

Rullier

Lagarde

Bouisson

, et al. Nutritional status of community-dwelling older people with dementia: associations with individual and family caregivers’ characteristics. Int J Geriatr Psychiatry 2013; 28: 580–588.

Tombini

Sicari

Pellegrino

, et al. Nutritional status of patients with Alzheimer’s disease and their caregivers. J Alzheimers Dis 2016; 54: 1619–1627.

Kunvik

Valve

Salminen

, et al. Baseline findings of CareNutrition intervention (RCT) among older caregivers - risk of malnutrition and insufficient protein intake. J Aging Res Clin Pract 2017; 6: 117–123.

Volkert

Kiesswetter

Cederholm

, et al. Development of a model on determinants of malnutrition in aged persons: a MaNuEL project. Gerontol Geriatr Med 2019; 5: 2333721419858438.

Dent

Wright

ORL

Woo

, et al. Malnutrition in older adults. Lancet 2023; 401: 951–966.

Psaltopoulou

Sergentanis

Panagiotakos

, et al. Mediterranean Diet, stroke, cognitive impairment, and depression: a meta-analysis. Ann Neurol 2013; 74: 580–591.

Burton

Newsom

Schulz

, et al. Preventive health behaviors among spousal caregivers. Prev Med 1997; 26: 162–169.

10.

Keller

Smith

Kasdorf

, et al. Nutrition education needs and resources for dementia care in the community. Am J Alzheimers Dis Other Demen 2008; 23: 13–22.

11.

Mole

Kent

Abbott

, et al. The nutritional care of people living with dementia at home: a scoping review. Health Soc Care Community 2018; 26: e485–e496.

12.

Williams

Perkhounkova

Shaw

, et al. Supporting family caregivers with technology for dementia home care: a randomized controlled trial. Innov Aging 2019; 3: igz037.

13.

Shaw

Williams

Perkhounkova

, et al. Effects of a video-based intervention on caregiver confidence for managing dementia care challenges: findings from the FamTechCare clinical trial. Clin Gerontol 2020; 43: 508–517.

14.

Borda

Ayala Copete

Tovar-Rios

, et al. Association of malnutrition with functional and cognitive trajectories in people living with dementia: a five-year follow-up study. J Alzheimers Dis 2021; 79: 1713–1722.

15.

Volkert

Chourdakis

Faxen-Irving

, et al. ESPEN Guidelines on nutrition in dementia. Clin Nutr 2015; 34: 1052–1073.

16.

Rivière

Gillette-Guyonnet

Voisin

, et al. A nutritional education program could prevent weight loss and slow cognitive decline in Alzheimer's disease. J Nutr Health Aging 2001; 5: 295–299.

17.

Yuen

EYN

Knight

Ricciardelli

, et al. Health literacy of caregivers of adult care recipients: a systematic scoping review. Health Soc Care Community 2018; 26: e191–e206.

18.

Albert

. Do family caregivers recognize malnutrition in the frail elderly? J Am Geriatr Soc 1993; 41: 617–622.

19.

Bilotta

Bergamaschini

Arienti

, et al. Caregiver burden as a short-term predictor of weight loss in older outpatients suffering from mild to moderate Alzheimer's disease: a three months follow-up study. Aging Ment Health 2010; 14: 481–488.

20.

Gibbs

Ellerbeck

Gajewski

, et al. The nutrition literacy assessment instrument is a valid and reliable measure of nutrition literacy in adults with chronic disease. J Nutr Educ Behav 2018; 50: 247–257.e241.

21.

Taylor

Sullivan

Ellerbeck

, et al. Nutrition literacy predicts adherence to healthy/unhealthy diet patterns in adults with a nutrition-related chronic condition. Public Health Nutr 2019; 22: 2157–2169.

22.

Gibbs

Kennett

Kerling

, et al. Assessing the nutrition literacy of parents and its relationship with child diet quality. J Nutr Educ Behav 2016; 48: 505–509.e501.

23.

Butler

Gaugler

Talley

KMC

, et al. Care interventions for people living with dementia and their caregivers. Rockville, MD: Agency for Healthcare Research and Quality, 2020.

24.

Salvà

Andrieu

Fernandez

, et al. Health and nutrition promotion program for patients with dementia (NutriAlz): cluster randomized trial. J Nutr Health Aging 2011; 15: 822–830.

25.

Creswell

. Research design: Qualitative, quantitative, and mixed methods approaches. London: Sage Publications, 2017.

26.

Guigoz

Lauque

Vellas

. Identifying the elderly at risk for malnutrition: the Mini nutritional assessment. Clin Geriatr Med 2002; 18: 737–757.

27.

Radtke

Poe

Stookey

, et al. Recommendations for the use of the Veggie Meter® for spectroscopy-based skin carotenoid measurements in the research setting. Curr Dev Nutr 2021; 5: nzab104.

28.

Lee

Chiang

, et al. Validating the capability for measuring age-related changes in grip-force strength using a digital hand-held dynamometer in healthy young and elderly adults. Biomed Res Int 2020; 2020: 6936879.

29.

National Cancer Institute. Overview & Background of the Healthy Eating Index, https://epi.grants.cancer.gov/hei/ (2018, Accessed 16 December 2024).

30.

National Cancer Institute. Diet History Questionnaire III (DHQ III). https://epi.grants.cancer.gov/dhq3/ (2021, accessed 16 December 2024).

31.

Thornton

Travis

. Analysis of the reliability of the modified caregiver strain index. J Gerontol B Psychol Sci Soc Sci 2003; 58: S127–S132.

32.

Sclan

Reisberg

. Functional assessment staging (FAST) in Alzheimer’s disease: reliability, validity, and ordinality. Int Psychogeriatr 1992; 4: 55–69.

33.

Riddle

Munoz

Clark

, et al. Prevention and treatment of malnutrition in older adults living in long-term care or the community: evidence-based nutrition practice guidelines. J Acad Nutr Diet 2024; 124: 896–916.e24.

34.

White

Guenter

Jensen

, et al. Consensus statement: academy of nutrition and dietetics and American society for parenteral and enteral nutrition. J Parenter Enteral Nutr 2012; 36: 275–283.

35.

Roberts

Denison

Martin

, et al. A review of the measurement of grip strength in clinical and epidemiological studies: towards a standardised approach. Age Ageing 2011; 40: 423–429.

36.

Wang

Y-C

Bohannon

, et al. Hand-grip strength: normative reference values and equations for individuals 18 to 85 years of age residing in the United States. J Orthop Sports Phys Ther 2018; 48: 685–693.

37.

Ikeda

Brown

Holland

, et al. Changes in appetite, food preference, and eating habits in frontotemporal dementia and Alzheimer’s disease. J Neurol Neurosurg Psychiatry Res 2002; 73: 371–376.

38.

Centers for Disease Control and Prevention. National Health and Nutrition Examination Survey Questionnaire, https://wwwn.cdc.gov/nchs/nhanes/continuousnhanes/questionnaires.aspx?BeginYear=2019 (2019, Accessed 16 December 2024).

39.

Corbin

Strauss

. Basics of qualitative research: Grounded theory procedures and techniques. Newberry Park: Sage, 1990.

40.

Denzin

. The research act: A theoretical orientation to sociological methods. New York: McGraw-Hill, 1978.

41.

US Department of Agriculture. Food and Nutrition Service. HEI Scores for Americans, https://www.fns.usda.gov/cnpp/hei-scores-americans (2023, accessed 16 December 2024).

42.

Winter

MacInnis

Wattanapenpaiboon

, et al. BMI And all-cause mortality in older adults: a meta-analysis. Am J Clin Nutr 2014; 99: 875–890.

43.

Allison

Gallagher

Heo

, et al. Body mass index and all-cause mortality among people age 70 and over: the longitudinal study of aging. Int J Obes 1997; 21: 424–431.

44.

Cabezas

M-F

Nazar

. A scoping review of food and nutrition literacy programs. Health Promot Int 2023; 38: daad090.

45.

Ong

RHS

Chow

Cheong

, et al. Associations between socio-demographics, nutrition knowledge, nutrition competencies and attitudes in community-dwelling healthy older adults in Singapore: findings from the SHIELD study. J Health Popul Nutr 2021; 40: 52.

46.

Fjellström

Starkenberg

Wesslén

, et al. To be a good food provider: an exploratory study among spouses of persons with Alzheimer's disease. Am J Alzheimers Dis Other Demen 2010; 25: 521–526.

47.

Sanders

Wengreen

Schwartz

, et al. Nutritional status is associated with severe dementia and mortality: the cache county dementia progression study. Alzheimer Dis Assoc Disord 2018; 32: 298–304.

48.

Carey

Deng

Ferrie

. The impact of malnutrition on cognition in older adults: a systematic review. Clinical Nutrition ESPEN 2024; 63: 177–183.

49.

Lehtisalo

Levälahti

Lindström

, et al. Dietary changes and cognition over 2 years within a multidomain intervention trial-the Finnish geriatric intervention study to prevent cognitive impairment and disability (FINGER). Alzheimers Dement 2019; 15: 410–417.

50.

Labyak

Sealey-Potts

Wright

, et al. Informal caregiver and healthcare professional perspectives on dementia and nutrition. J Hum Nutr Diet 2024; 37: 1308–1319.

51.

Cook

Kenny

. The actor–partner interdependence model: a model of bidirectional effects in developmental studies. Int J Behav Dev 2005; 29: 101–109.