Caregivers’ concerns and supports needed to care for adults with Down syndrome

Abstract

Research regarding caregivers for individuals with Down syndrome mainly focuses on the pediatric population and not on the experience of caregivers themselves. Our objective was to understand caregiver-reported experiences and concerns for themselves and the individual they care for through a survey of caregivers of adults with Down syndrome. We conducted a survey of N=438 caregivers of adults with Down syndrome and asked about the perspectives of the respondents surrounding caregiving and demographics. The most common concerns among caregivers were planning for future needs (72.1%) and what happens when they (the caregiver) are gone (68.3%). Concerns they had for the individual they cared for were employment (63.2%) and friendships/relationships (63.2%). We found no significant difference in responses based on caregiver education level. Our survey identified six themes for the feedback about what clinical and research professionals should know to better serve individuals with Down syndrome, their families, and those who support them. Many caregivers discussed topics including healthcare, coordination, and competence and ability. More efforts for research into the caregiver experience for adults with Down syndrome is needed.

Caregivers for adults with Down syndrome have many tasks and responsibilities. Day-to day caregiving can consist of care coordination, assisting the individual with activities of daily living, and providing or managing transportation for social and employment obligations. Caregivers often assist with the management of social and emotional health for the individual they care for (Clift, Coupland, Keogh, Hemingway, & Hippisley-Cox, 2021; Huls et al., 2021). As medical advances have extended the lifespan for individuals with Down syndrome the roles and responsibilities for caregivers often include Alzheimer’s and dementia care (Ilacqua et al., 2020). With approximately 100,000 adults with Down syndrome in the US, the summative caregiving responsibility is huge.

In many instances, caregivers for adults with Down syndrome are family members (Doody & Keenan, 2021). The reliance on family caregivers may be attributable to difficulties in accessing independent living and housing support for adults with Down syndrome and cultural practices surrounding caregiving (Hart & Neil, 2021). Likely, many caregivers have missed opportunities and activities due to the unmet resources and lack of services for adults with Down syndrome. Disruption of routine and life-changes can be especially difficult for caregivers of adults with Down syndrome (Murphy et al., 2017) and may lead to more mental health issues like caregiver anxiety (Walker, Dosen, Buitelaar, & Janzing, 2011).

To date, little attention has been paid to the experience of caregivers of adults with Down syndrome and their concerns for themselves and individuals they care for. Most research focuses on caregivers of children with Down syndrome and children have different needs, challenges, and opportunities compared to adults (Oliveira & Limongi, 2011). Our objective was to understand caregiver-reported experiences and concerns for themselves and the individual they care for through a survey of caregivers of adults with Down syndrome. We applied a mixed-method approach to quantify and explore the perspectives of the respondent’s surrounding caregiving. We examined differences in concerns by caregiver age and education level, hypothesizing that the age of the adult with Down syndrome and educational attainment of the caregiver may contribute to different types of concerns and stressors due to potential caregiver transitions and economic security.

Methods

Caregiver Survey

We created a survey for caregivers of adults with Down syndrome in January 2021. The overall goal of the survey was to 1) understand health and employment of adults with Down syndrome and 2) describe and understand challenges of barriers faced by caregivers. Co-lead by researchers at Boston University and LuMind IDSC, a panel of researchers, Down syndrome nonprofit executives, caregivers, advocates, and pharmaceutical company representatives assisted in survey design and input. Based on group feedback the survey was designed with six sections: caregiver demographics (11 questions), individual with Down syndrome demographics (38 questions), Down syndrome employment history (18 questions), Down syndrome healthcare (22 questions), caregiver experience (14 questions), and clinical trial participation (12 questions). The survey was disseminated online using Qualtrics and consisted of 115 questions that took one hour to complete. The survey included fill-in, yes/no, open-ended, and likert scale questions. The full survey is provided in appendix 1. Eligibility for the survey included identification as an adult (≥ 18 years) caregiver for an adult individual with Down syndrome (≥ 18 years), and ability to take the survey in English. The survey was open from April 2021 to September 2021. We recruited caregivers through LuMind IDSC and National Down Syndrome Society post-card mailers, email listservs, and social media pages. Caregivers were eligible for a raffle for $50 Amazon gift cards. We estimate we had approximately 200,000–300,000 engagements via social media and newsletters. The survey was open until N=500 consented for the survey. Respondents that did not complete at least 20% of the survey and those from a caregiver of an individual with Down syndrome < 18 years old were excluded from the study. There was little demographic difference comparing those that did and did not complete >20% of the survey.

Quantitative Survey Questions

The survey asked about caregiver demographics, demographics of the individual with Down syndrome, caregiver concerns for themselves, caregiver concerns for the individual with Down syndrome, and supports caregivers need. We evaluated differences in concerns by age of the individual with Down syndrome, grouping into age categories of 18–29 years, 30–45 years, and 46+ years. We used this age grouping to account for different life stages (young, middle, and older adulthood) while maintaining adequate sample sizes within each group. We ran log-binomial regression models to estimate whether the age of the individual with Down syndrome was associated with caregiver concerns and the supports caregivers need. We adjusted for caregiver education in regression models to account for potential confounding due to education and education as a proxy for socioeconomic status. We also explored results stratified by caregiver education.

Qualitative Survey Questions

The survey included two open-ended questions about changes due to the COVID-19 pandemic (N=431 responses, 98% of study sample) and what advice caregivers want researchers and clinicians to know to better support the Down syndrome community (N=429 responses, 98% of study sample). Drawing on Braun and Clarke’s guide to thematic analysis, we worked through the process of response familiarization, code structure development, theme generation, and reporting findings (2006). Two authors read all survey responses for each question and independently generated a list of codes. Together, both authors compared codes to create themes until saturation was reached and then categorized related quotations. We synthesized six encompassing, higher-order themes from our original theme list and grouped them by concerns pertaining to the caregiver themselves or concerns pertaining to the individual they care for. These key themes are described in figure 1.

Figure 1.

Qualitative themes on caregiving identified from a survey of caregivers of adults with Down syndrome

Results

Of the 500 surveyed, we excluded 30 with only <20% of the survey completed. An additional 32 surveyed did not meet study criteria as the individual with Down syndrome was <18 years old. We included survey responses from 438 caregivers of an adult with Down syndrome. Two-hundred eight respondents cared for an individual aged 18–29 years, 160 aged 30–45 years, and 70 aged 46+ years (Table 1). Most respondents were white, non-Hispanic, and resided in the United States. Most caregivers were highly educated with at least a bachelor’s degree and were the mothers of individuals with Down syndrome. 3.4% of surveys came from paid caregivers. Most surveys said that they preferred the term “loved one” when asked what they prefer to call the individual they cared for.

Table 1.

Demographic characteristics of adults with Down syndrome and their caregivers

Characteristics of adults with Down syndrome N=438	N (%)
Age (years)
18–29	208
30–45	160
46+	70
Mean (SD)	32.9 (11.1)
Median (range)	30 (44)
Gender
Male	214 (48.9)
Female	223 (50.9)
Missing	1 (0.23)
Race
White	391 (89.3)
Black/African American	10 (2.6)
Mixed race / American Indian	19 (4.3)
Missing / Prefer not to say	18 (4.1)
Ethnic Group
Hispanic	21 (4.8)
Non-Hispanic	417 (95.2)
Physical Health conditions *
Attention Deficit Hyperactivity Disorder	35 (8.0)
Autism	40 (9.1)
Alzheimer’s Disease	48 (11.0)
Epilepsy	25 (5.7)
Cardiovascular conditions	168 (38.4)
Obesity/Overweight	212 (48.4)
Sleep Apnea	179 (40.9)
Thyroid conditions	252 (57.5)
Mental health conditions *
Anxiety disorders	117 (26.7)
Behavioral challenges	113 (25.8)
Depression / depressive disorders	70 (15.9)
Obsessive Compulsive Disorder	80 (18.3)
Country
United States	416 (95.0)
Other	22 (5.0)
Living Situation
In a group home	17 (3.9)
In caregiver’s home with paid support	102 (23.3)
In caregiver’s home with unpaid family support	240 (54.8)
Independent/Alone	10 (2.3)
Other	68 (15.5)
Caregiver characteristics N=438	N (%)
Caregiver Age (years)
18–44	17 (4.5)
45–54	64 (17.0)
55–64	158 (42.0)
65–74	112 (29.8)
75+	25 (6.7)
Missing	62
Caregiver type
Primary Caregiver	277 (70.4)
Equally share responsibilities	89 (22.6)
Other	27 (6.9)
Missing	15
Caregiver relationship
Mother	304 (74.5)
Father	15 (3.7)
Sister	52 (12.7)
Other family member	21 (5.1)
Paid caregiver	16 (3.9)
Missing	30
Caregiver education
High school graduate or less	18 (4.1)
Some college / Associates degree	93 (21.3)
Bachelor’s degree	138 (31.5)
Graduate degree	113 (25.8)
Missing	62
Income (USD)
<20,000	76 (22.8)
50,000–79,999	69 (20.2)
80,000–99,000	49 (14.4)
100,0000–149,999	76 (22.9)
>150,000	71 (20.8)
Missing	97

^*Individuals can have multiple condition

Quantitative results

Caregivers were asked what areas were of most concern for themselves (Table 2). The most common concerns, regardless of the age of the person they cared for, were planning for future needs (72.1%) and what happens when they (the caregiver) are gone (68.3%). When stratified by the age of the individual with Down syndrome and controlling for caregiver education level, concerns of financial planning for caregiving and the financial responsibility of caregiving were both greater concerns for caregivers of younger adults compared to older adults (Table 2). In contrast, caregivers who cared for an individual over 46 years old reported less concerns regarding what happens when (the caregiver) is gone compared to the youngest age group (47.1% had concern in oldest group compared to 68.3% in the youngest group; p=<0.001).

Table 2.

Caregiver concerns related to their caregiving for an adult with Down syndrome, stratified by age of the individual with Down syndrome.

			Age of person with Down syndrome
	Total		18–29 years		30–45 years			46+ years
	N=438		N=208		N=160			N=70
	N	%	N	%	N	%	P-Value	N	%	P-Value
A lack of skills / training	20	4.6	9	4.3	7	4.4	0.9	4	5.7	0.5
Burnout	225	51.4	111	53.4	75	46.9	0.3	39	55.7	0.7
Your mental health	144	32.9	70	33.7	51	31.9	0.8	23	32.9	1.0
Financial responsibility of caring	110	25.1	67	32.2	30	18.8	0.003	13	18.6	0.04
Impact on employment	114	26.0	77	37.0	21	13.1	<0.001	16	22.9	0.06
Impact on personal relationships	183	41.8	95	45.7	63	39.4	0.2	25	35.7	0.2
Caring for multiple people	52	11.9	29	13.9	13	8.1	0.1	10	14.3	0.8
Physical health	116	26.5	53	25.5	44	27.5	0.7	19	27.1	0.7
Access to health care	26	5.9	16	7.7	4	2.5	0.04	6	8.6	0.8
Planning for future needs	316	72.1	151	72.6	112	70.0	0.7	53	75.7	0.6
What happens after I am gone	299	68.3	158	76.0	108	67.5	0.06	33	47.1	<0.001
Financial planning for caring	156	35.6	91	43.8	48	30.0	0.01	17	24.3	<0.001
Coping with my own aging	233	53.2	110	52.9	88	55.0	0.7	35	50.0	0.7
Coping with family and children	112	25.6	64	30.8	36	22.5	0.08	12	17.1	0.04

Bold indicates statistical significance at alpha=0.05

For age comparisons, 18–29 years is the referent group

P values calculated using logistic regression modeling the effect of age on caregiver concern, adjusted for caregiver education.

As for concerns regarding the individual they care for (Table 3), the most common concerns were employment (63.2%) and friendships/relationships (63.2%). Among caregivers who cared for individuals aged 46 or older, there were significantly more concerns regarding home modifications/safety (22.9% concern in oldest group compared to 11.5% in the youngest group; p=<0.01) and less concerns about friendships/relationships (31.2% concern in the oldest group, 66.9% concern in the youngest group; p=<0.01) compared to the youngest group. Concerns of future residential options, mental health, Alzheimer’s disease/Dementia, financial security, safety and neglect, and transportation support differed significantly across the age groups.

Table 3.

Caregiver concerns for the adults with Down syndrome they care for, stratified by age of the individual with Down syndrome

			Age of person with Down syndrome
	Total		18–29 years		30–45 years			46+ years
	N=438		N=208		N=160			N=70
	N	%	N	%	N	%	P-Value	N	%	P-Value
Home modifications/safety	55	12.6	24	11.5	13	8.1	0.08	16	22.9	<0.01
Future residential options	272	62.1	128	61.5	90	56.3	<0.01	39	55.7	<0.01
Physical health	236	53.9	107	51.4	86	53.8	0.5	43	61.4	0.09
Mental health	191	43.6	96	46.2	63	39.4	0.02	27	38.6	0.03
Alzheimer’s disease /Dementia	232	53.0	88	42.3	81	50.6	<0.01	47	67.1	<0.01
Guardianship/legal options	107	24.4	60	28.8	30	18.8	0.02	17	24.3	0.5
Employment/employment alternatives	277	63.2	108	51.9	47	29.4	0.1	2	2.9	0.3
Financial security	170	38.8	106	51.0	50	31.3	<0.01	14	20.0	<0.01
Adult education opportunities	91	20.8	61	29.3	26	16.3	<0.01	2	2.9	0.1
Friendships/relationships	277	63.2	148	71.2	107	66.9	0.5	22	31.4	<0.01
Safety and neglect	168	38.4	97	46.6	54	33.8	0.02	17	24.3	<0.01
Transportation support	133	30.4	82	39.4	43	26.9	0.03	8	11.4	<0.01

Bold indicates statistical significance at alpha=0.05

For age comparisons, 18–29 years is the referent group

P values calculated using logistic regression modeling the effect of age on caregiver concern, adjusted for caregiver education.

Caregivers were also asked what support they need themselves (Table 4). The only support that most caregivers reported needing was healthcare providers’ knowledge of Down syndrome (55.9%).

Table 4.

Caregiver reported supports needed for caregivers of adults with Down syndrome

			Age of person with Down syndrome
	Total		18–29 years		30–45 years			46+ years
	N=438		N=208		N=160			N=70
	N	%	N	%	N	%	P-Value	N	%	P-Value
Educational info about DS caregiving	80	18.3	27	13.0	31	19.4	0.1	18	25.7	0.6
Access to comm. health care	58	13.2	23	11.1	22	13.8	<0.01	13	18.6	0.5
Providers are knowledgeable about DS	245	55.9	116	55.8	90	56.3	0.8	39	55.7	0.7
Employers understand caregiver duties	41	9.4	30	14.4	5	3.1	<0.01	6	8.6	0.2
Caregiver support groups	80	18.3	43	20.7	17	10.6	<0.01	20	28.6	0.4
Respite care/home health care	198	45.2	94	45.2	62	38.8	0.2	42	60.0	0.02
How to talk about Alzheimer’s disease with loved one	35	8.0	11	5.3	10	6.3	0.4	13	18.6	0.5
Environmental modifications	34	7.8	10	4.8	7	4.4	0.01	16	22.9	0.4
Financial planning for loved one	159	36.3	94	45.2	48	30.0	<0.01	17	24.3	<0.01
Financial planning for self	81	18.5	54	26.0	20	12.5	<0.01	7	10.0	0.01
End of life planning for loved one	116	26.5	47	22.6	40	25.0	0.5	29	41.4	<0.01

Bold indicates statistical significance at alpha=0.05

For age comparisons, 18–29 years is the referent group

P values calculated using logistic regression modeling the effect of age on caregiver concern, adjusted for caregiver education

When stratified by age and adjusting for caregiver education level, we saw that younger caregivers reported more need for financial planning for themselves and the individual they care for. We saw no difference by age for concern about providers having knowledge about Down syndrome, with roughly 55% in each age category indicating it as a concern. We also explored differences in concerns by caregiver education controlling for age- more education was associated with more reported concerns and need for supports (Supplement 1).

Qualitative Results

We analyzed all the open-ended questions responses. Most caregivers provided feedback about what clinical and research professionals should know to better serve individuals with Down syndrome, their families, and those who support them. We identified six high-level domains and further exploring through thematic subsets related to either the caregiver themselves or loved one’s needs. See Figure 1.

1. Healthcare:

Caregivers shared their concerns and wishes for the healthcare community. Caregivers themselves expressed frustrations about navigating the health care system for their loved ones through comments like, “there is a shortage of doctors” and having “too few adult Down syndrome clinics”. Another caregiver highlighted their confusion by stating, “all the resources should be connected and clearly laid out for families to navigate.” For several of the caregivers, the lack of individualized care was frustrating and suggested that current healthcare options for adults with Down syndrome should be better tailored towards the specific needs of the individual and their families. Other caregivers stressed their loved one’s unique needs by calling for more medical education stating, “they cannot be clumped into the same medical book as a ‘typical’ age related and symptomatic person,” and the unique needs of those with Down syndrome as, “too few medical professionals who have an understanding of the Down syndrome community.”

2. Competence and ability:

Caregivers expressed the desire for professionals to understand the capabilities of individuals with Down syndrome. Some caregivers spoke of their loved one’s strengths and values adding that, “we should continue to have high expectations” for individuals with Down syndrome and that “<they> have high capabilities that are best realized when they are pushed towards greater independence.”

Others highlighted their expectations as parents and caregivers that encourage opportunities for growth and learning for individuals with Down syndrome, for example, that, “All kids grow into a variety of adult lifestyles, careers, levels of independence regardless of having Down syndrome or not. We should always continue to grow and explore new opportunities.”

3. Care Coordination:

Many caregivers notedstruggles with coordinating care for their loved ones ranging from housing and financial concerns to worries about safety. One caregiver expressed the desire for “real, safe, varied, affordable housing options.” Others explained the financial stress of caregiving, emphasizing that, “family income shouldn’t be an issue when trying to get help” and the need for more “part time respite opportunities as I am spending 50% of my income on caregivers.”Some caregivers commented on safety concerns with transportation and supportive housing that underscored difficulties managing their loved one’s care. For example, one caregiver noted that her loved one, “has access to special transportation for people with disabilities through the local bus system, but her drop off at a location can vary … which can create unsafe conditions.” Another caregiver noted their fears for loved one’s safety, stating “the worry is for their loved one’s quality of life and their loved one’s safety, free from abuse and neglect when in the care of others.”

4. Social wellbeing:

Caregivers emphasized their loved ones’ social needs that include engagement opportunities and support. Some caregivers highlighted communication barriers by stating that it is, “a huge struggle” or that “speech or lack of it is the most significant barrier to communicating with others, gaining friends, and finding more work opportunities” Another caregiver wanted to highlight more socialization for a loved one, commenting on the need for, “more social opportunities beyond Special Olympics.”

5. Health conditions:

Caregiver responses specified distinct health concerns with one caregiver asking about, “what to expect when a person with Down syndrome is [losing skills] due to Alzheimer’s disease [to] understand what is ‘normal’”, while a second caregiver discussed co-occurring conditions like autism since their family, “identifies less with the Down syndrome community and more with the autism community.” Other caregivers felt mental health concerns like anxiety should be highlighted, stating that, “with severe behaviors [like] anxiety, we have no support” and that “prioritizing mental health resources [is important] since finding a counselor has been extremely helpful.”

6. Age transitions:

Caregivers captured the struggle with life transitions for both the caregiver and loved one. As caregivers begin to age, many retain responsibilities for their loved one. Concern for the future care planning as parents and caregivers age arose in survey responses such as, “planning for someone who will likely outlive his father and mother,”, “the need for safe, secure housing for my child after we are gone”, and “safe place when I am gone.” For loved ones, caregivers worried about continuing loved one’s engagement after formal school ends by noting, “during educational years, there are so many opportunities for growth … after school at age 21, there is minimal support” and, “support groups and contact with other parents seems to fizzle out as your child with Down syndrome gets older.”

Discussion

What we know for caregivers from pediatric populations may not translate to adult caregiving, (Illouz et al., 2021). In a survey of caregivers of adults with Down syndrome, we identified concerns and unique needs for this population. Our findings suggest avenues to improve health and well-being for caregivers and the individuals they care for.

One of the most common wishes among caregivers was to have individualized care. Healthcare teams tailored to each patient and their needs could ease some of the stressors expressed by the caregivers in the survey. While adults with Down syndrome may have some commonalities that healthcare providers can refer to, there are many other factors and concerns specific to each person, needing an individualized approach to care. The guidelines published for caring with adults with Down syndrome are a major step forward (Tsou, 2020), but individuals with Down syndrome have their own health and wellness needs and a personalized medicine approach beyond Down syndrome guidelines are needed.

It is common for researchers, healthcare workers, and other members of the community to focus on barriers faced by individuals with Down syndrome and their caregivers (Ilacqua et. al., 2020). However, respondents to the survey highlighted the many abilities and competences of their loved one. Services, while not perfectly designed, are generally adequate and appreciated by users. However, accessibility to such services such as specialized healthcare (including mental health), social activities after aging out of school programs, and safe independent housing and transportation is lacking. These findings have been echoed in previous studies (Borthwick, Inchley, & Jones, 2021). By promoting the reach and access of such services, individuals with Down syndrome can practice independence safely and relieve some of the stressors discussed by the caregivers.

We see from our survey analysis that the concerns among caregivers mirror one another in both the quantitative and qualitative results. Safety and neglect concerns were significant across all age categories and were highlighted frequently in open-ended responses. Regardless of age, survey respondents stress about their loved one being safe in their everyday activities. Having access to more specialized inclusive healthcare, transportation, and housing could be services to focus impact efforts towards. Further, what happens after the caregiver is no longer able to provide care was a common concern. Interestingly, caregivers of older adults with Down syndrome had less concern about what happens after they are gone compared to caregivers of younger adults with Down syndrome. We can hypothesize to reasons for this association. First, the lifespan for adults with Down syndrome is approximately 65 years old (Iulita, 2022), so it is possible that some caregivers (particularly parent caregivers) will survive past the individual with Down syndrome. Second, a plan for caregiving continuation may have been planned for by the time the individual with Down syndrome is older. More examination of how individuals and families plan for care continuation is needed as cohorts of adults with Down syndrome live to older adulthood.

Another factor from our survey analysis that significantly impacted caregivers was financial planning. Financial concerns and financial planning were significant across all age categories and was reported as a concern for the caregivers themselves in addition to a concern they had for the individual they cared for. This again is related to the need for services to be more accessible. The financial cost for quality healthcare, transportation, and housing requires support from communities and governments for them to be equitably accessible to caregivers and their loved ones (Hart & Neil, 2021).

Many caregivers of adults with Down syndrome had similar concerns to caregivers of children with Down syndrome, namely concerns for safety and neglect and financial support (Hart & Neil, 2021). Not surprisingly, caregivers of children had concerns about educational access and support (Hart & Neil, 2021), which were not relevant to caregivers of adults who had left the school system. Caregivers of adults had more needs and concerns surrounding healthcare, specifically Alzheimer’s disease. Both groups of caregiver’s experience stress and challenges and the need for respite and social support.

While the sample size for this survey was larger than many other studies conducted previously (Ilacqua et. al., 2020), there are limits to the generalizability of the results due to the lack of racial and financial diversity of caregivers and adults with Down syndrome. We had a broad recruitment strategy but were not able to specifically target under-represented groups and were unable to translate the survey to Spanish or other languages. Because of the nature of an online survey, we were unable to calculate a response rate. Self-selection bias was also likely in the respondents used in the survey. Since most of the caregivers were highly educated, we anticipate that they may have different needs and concerns than a lower-income sample. The research team was unable to go back to respondents for clarification or to ensure the interpretations of quotes accurately expressed the points of the caregivers. The lack of verification could have produced errors such as telescoping or exaggeration. However, the large sample did lend itself to saturation for many key themes developed which were also common among the quantitative responses. As themes such as those regarding finances were repeated among respondents, researchers were able to interpret the meaning of the open-ended responses with more confidence.

Conclusion

We see that financial concerns are greatest among those who care for adults aged 18–29 and concerns regarding accessing resources as reported by caregivers becomes more common as the individual with Down syndrome increases in age. There are significant differences in many reported caregiving concerns across age groups of individuals with Down syndrome. These findings indicate that though few studies focus of caregivers of adults with Down syndrome, there are areas of concern that need to be considered and addressed by health care providers, community members, and researchers. Based on the desire for effective caregiver supports expressed through the survey, policymakers, non-profits, and the various service providers should continue to push for funding and resources for caregiving services.