caring for people with dementia: caregivers' experiencesdisease progression of dementia. total....

AARP.ORG/RESEARCH | © 2018 AARP ALL RIGHTS RESERVED DOI: AARP RESEARCH

November 2018

https://doi.org/10.26419/res.00262.001

CARING FOR PEOPLE WITH DEMENTIA: CAREGIVERS’ EXPERIENCES

AARP.ORG/RESEARCH | © 2018 AARP ALL RIGHTS RESERVED AARP RESEARCH

Objectives and MethodologyObjectives• To understand the experiences of those caring for loved ones with dementia or other

forms of cognitive impairment, and to explore how those experiences differ from other caregivers.

Methodology: • Mode: Online survey of 1,112 caregivers age 18 and older using AARP’s proprietary

panel. • Fielding Dates: October 1 - October 10, 2018 • Sample: The sample was drawn from AARP’s online panel of Americans.

Respondents were screened for caregiving status*. Quotas were set based on type of caregiver:

– 711 caregivers who care for a loved one with dementia or other form of cognitive impairment

– 401 caregivers who care for a loved one without dementia• Weighting: Due to the scarcity of adequate benchmarks for the population of interest

(caregivers age 18 and older), panelists are weighted prior to their screening. That is all panelists aged 18 years old, regardless of their caregiving status are weighted to August 2018 Current Population Survey benchmarks for gender, race, age Hispanic ethnicity, marital status, census division, age and income. After the weighting, caregiving panelists are selected and the total sample size adjusted to reflect actual completed interviews. A second stage of weighting was then conducted using benchmarks from the 2015 Caregiving in the U.S. survey, a joint survey from AARP and the National Alliance for Caregiving conducted on GfK Knowledge Panel where caregivers 18 and older are easily identified. This second stage adjusted the first stage weight by gender and income to more accurately reflect this specific population.

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*S3: Are you currently providing unpaid care to a relative or friend 18 years or older to help them take care of themselves? AND S4: Has your loved one been diagnosed with dementia (such as Alzheimer’s disease) or another form of cognitive impairment? (n=1112)


Key FindingsCaregivers for those with dementia or other cognitive impairments have higher demands put upon them across several facets of their lives, including physical and mental health, relationships, and work life.

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Although many are able to see and experience the positives that come from a caregiving relationship, such as a closer relationship with their loved one and a greater sense of meaning, these caregivers are also hit harder by many of the challenges that caregiving presents.

Caregivers for those with dementia spend more time per week caregiving on average than other caregivers, and they are more likely to find that caregiving has had an effect on their relationships with their loved one and other family members.

Caregivers for those with dementia report being just as healthy as other caregivers. However, they are also more likely to admit that caregiving has resulted in increased physical, emotional, and social stress. They are more likely to say that caregiving has resulted in less sleep, increased depression and anxiety, less time for themselves and with family, increased social isolation, and more time off from work. Caregivers of those with dementia are also more likely than other caregivers to have delayed healthcare for themselves due to caregiving.

Overall, caregivers of dementia sufferers are satisfied with their experience with healthcare providers, both in terms of information about their loved one’s condition as well as how to care for them. However, they continue to seek out information about caregiving at a higher rate than other caregivers, and are pulling from a greater variety of sources, indicating an potential unmet need for resources on caregiving for their loved one.

AARP.ORG/RESEARCH | © 2018 AARP ALL RIGHTS RESERVED AARP RESEARCHAARP.ORG/RESEARCH | © 2018 AARP ALL RIGHTS RESERVED AARP RESEARCH 4

DEMENTIA CAREGIVERS: HOW THEY’RE CAREGIVING


Caregivers of Those with Dementia Are More Likely to Be Providing Care for a Parent Than Other Caregivers

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Non-dementia caregivers, meanwhile, are more likely to be taking care of a spouse or partner or a friend or neighbor. Those age 35-49 and 50-64 are more likely to be taking care of parents (49% and 59%, respectively), while young caregivers are significantly more likely to be taking care of other family members (31% among 18-34).

Q1 : Who are you caring for? If you are caring for more than one person, please think about the person you provide the most care for. (n=1112)

44%

48%

37%*

19%

20%

18%

18%

15%*

21%

10%

8%

14%

7%

6%

8%*

2%

2%

2%

Total(n=1112)

Dementia caregivers (n=711)

Non-dementia caregivers (n=404)

Parent, Step-parent, parent-in-law Other family Spouse/Partner Friend/Neighbor Adult child Other

* Indicates a significant difference at a 95% confidence interval


Caregivers of Those with Dementia Spend Significantly More Time Per Week Caring for Their Loved One than Other Caregivers

12%

30% 29% 30%*27%* 28%

23%21%

0%

5%

10%

15%

20%

25%

30%

35%

5 or fewer hours per week 6-10 hours 11-20 hours 21 or more hours

Average Hours Spent Caregiving per WeekDementia caregivers Non-dementia caregivers

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On average, caregivers for those with dementia spend 13.7 hours per week caregiving vs. 11.7 hours spent by other caregivers. For those age 35 and older, over three in ten caregivers spend 21 or more hours per week caregiving.

Q2 : About how many hours per week on average do you spend caring for or assisting this person? Would you say...Q3 : How long have you been providing this care/assistance? (n=1112)

On average, caregivers have been caring for their loved

one for 2.8 years

(there were no differences in length of time caregiving between caregivers of those with

dementia vs. other caregivers)



Most Caregivers of Loved Ones with Dementia Characterize the Onset of Loved One’s Dementia as a Slow Progression over Time

24%

74%

29%

70%

28%

70%

16%

81%

13%

84%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

Sudden onset Slow progression over time

Disease Progression of DementiaTotal 18-34 35-49 50-64 65+

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The predominance of slow progressing dementia is likely due to the prevalence of Alzheimer’s Disease, which is the most common cause of dementia. Younger caregivers are significantly more likely to say the onset of their loved one’s cognitive decline was sudden.

S5 : Would you say your loved one’s dementia or cognitive impairment was brought on suddenly or was it a more of a slow progression over time? (n=711)


Caregivers Cite Emotions and the Demands of Care as the Biggest Challenges of Caring for Someone with Dementia

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Q14 : Thinking about your caregiving experience as a whole, what has been the biggest challenge in caring for someone with dementia or other cognitive impairment? (n=711)

*Top mentioned challenges within each category shown; see appendix for full breakdown

“Just being able to communicate and interact with them becomes more of a challenge so we can tell how they are doing and what to get for them.”

–male caring for parent, age 55

“Trying to figure out his needs and how to be as helpful and as positive as I can be. It is also hard to see him declining and losing some of himself.”

--female caring for other family member, age 64

“It is difficult to see them get confused and agitated. She does not know what time of the day it usually is and does not know what is going on. It is hard to know she is not present.”

--female caring for parent, age 26

“The biggest challenge has been the time commitment required for their care. It has impacted my work and social life. Trying to balance these responsibilities is a struggle. It is also very difficult to witness a once supremely intelligent, thoughtful man suffer with memory loss and cognitive issues.”

--female caring for a parent, age 50

“Not acting frustrated when you are very frustrated.”--female caring for parent, age 59

Emotional Challenges (net) 32%Seeing them decline/deteriorate/get worse/fade away (compared to how you knew them) 6%

Having/maintaining patience 5%Being understanding/understanding them/their needs 3%Dealing with/accepting the changes 3%The emotional aspect/emotionally draining 2%

Time (net) 16%Time/time required to assist/not having enough time 7%Not having time for myself 4%Balancing (between family/person's care/personal time/job) 4%

24 hours care/cannot be left alone 3%

Memory issues (net) 17%Forgetfulness/They don't remember/forget 7%Not being recognized/My mother not recognizing me 7%

Caring for the person (net) 26%Helping/getting them to understand (what is happening, how to do things, etc.) 5%

Communication 3%Making sure they are ok/have all they need/taking care of them 3%

Most Mentioned Challenges in Caring for Someone with Dementia*


LIFE CHANGES


Caregivers of Those with Dementia Are More Likely to Say Their Relationships Have Changed Since They Began Providing Care

64%

22%*

15%

63%

13%

24%

Grown closer

Grown further apart

Had no impact

Impact of Caregiving on Relationship with Care Recipient

Dementia caregivers Non-dementia caregivers

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Although the majority of all caregivers say that their relationship with the loved one they care for has grown closer over time, caregivers to those with dementia are more likely to say their relationship with their loved one has grown further apart (22% vs. 13%) with caregiving. These caregivers are also more likely to say the relationship with other family has changed as a result of caregiving.

Q4 : We are interested in learning how your relationship with the person you care for has changed since you began helping them. Would you say you have grown closer, grown further apart, or had no impact? (n=401)Q4A : We are interested in learning how your relationship with the person you care for has changed since they were diagnosed with dementia or other cognitive impairment. Would you say you have grown closer, grown further apart, or has it had no impact? (n=711)

Q5 : We are interested in learning how your relationship with other family members has changed since you began helping your loved one. Would you say you have grown closer, grown further apart, or had no impact? (n=1112)

53%*

24%*

23%

42%

13%

45%*

Grown closer

Grown further apart

Had no impact

Impact of Caregiving on Relationship with Other Family


Caregivers who spend 11+ hours per week caregiving are significantly more likely to say their relationships have worsened with other family than those who spend less time caregiving (26% vs. 13%)



While Caregivers of Those with Dementia Report Engaging in Positive Health Behaviors as a Result of Caregiving, They Are Also More Likely to Experience Negative Changes as Well

71%*

65%*

54%*

47%*

39%

37%*

28%*

54%

53%

41%

37%

33%

24%

18%

Caused me to sleep less

Made me feel anxious

Made me feel depressed

Led me to exercise more

Caused me to eat more or gain weight

Caused me to lose weight

Caused me to drink more alcoholic beverages

Health Changes in Life as a Result of CaregivingTop 2 Box Rating on 5-point Scale


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Q6 : The following are aspects of life that may change as a result of caregiving responsibilities. Please tell us how much you agree or disagree with the following statements. (n=1112)Brain health question asked only of dementia caregivers (n=711)


79%of caregivers for those

with dementia took steps to maintain or improve their own brain health as a result of caregiving


All Caregivers Report Positive Emotional Changes, but Caregivers for Those with Dementia Are More Likely to Report Negative Changes as Well

75%

74%

72%*

65%*

54%*

69%

77%

63%

53%

41%

Brought meaning to my life

Given me a sense of fulfillment

Led me to pray or meditate more

Made me feel anxious

Made me feel depressed

Mental and Emotional Health Changes in Life as a Result of Caregiving

Top 2 Box Rating on 5-point Scale


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Q6 : The following are aspects of life that may change as a result of caregiving responsibilities. Please tell us how much you agree or disagree with the following statements. (n=1112)



Caregivers Are More Satisfied with Their Relationship with the Person They Care for, but Those Who Care for Loved Ones with Dementia Report Increased Social Isolation and Poorer Social Relationships

74%

70%*

62%*

60%*

58%*

45%*

73%

49%

40%

44%

44%

29%

Made me more satisfied with my relationship with theperson I care for

Caused me to spend less time with friends

Left me with almost no time for myself

Caused me to spend less time with other family members

Caused my social life to suffer

Made me feel alone

Changes in Social Life as a Result of CaregivingTop 2 Box Rating on 5-point Scale


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Q6 : The following are aspects of life that may change as a result of caregiving responsibilities. Please tell us how much you agree or disagree with the following statements.



Caregivers of Those with Dementia Report a Greater Impact on Their Work Situation

59%*

60%

46%

55%

Impacted my job or work situation (amongthose working)

Caused me to worry about finances

Changes in Life as a Result of Caregiving

Top 2 Box Rating on 5-point Scale


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Q6 : The following are aspects of life that may change as a result of caregiving responsibilities. Please tell us how much you agree or disagree with the following statements. (n=1112)* Indicates a significant difference at a 95% confidence interval

62%*

62%*

53%*

49%

47%*

37%*

28%*

40%

45%

32%

39%

31%

20%

16%

Work different hours at your job (e.g., workearlier or later or change the days per week)

Leave work early unexpectedly

Take paid time off work

Work fewer hours at your job

Take unpaid time off work

Work more hours at your job

Take an additional job

Changes in Work Behavior as a Result of Caregiving

% Yes among those employed


Caregivers of loved ones with dementia are significantly more likely to say that caregiving has impacted their work behavior than other caregivers are—they are more likely to leave work early, take paid and unpaid time off to care for their loved one, work different hours, and take an additional job.

Q7 : In the past 12 months, have you had to do any of the following as a result of caregiving? (n=671)


Caregivers for Those with Dementia Are More Likely to Delay Medical Appointments Because of Caregiving

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Although caregivers for loved ones with dementia report good health overall (56% say they are in excellent or very good health), they are significantly more likely to say they have put off medical care because of their caregiving responsibilities. Over half (55%) have done so, compared to just 38% among other caregivers.

Q12 : How would you rate your overall health at the present time?Q13 : Have you ever delayed you own health care or medical appointments because of your caregiving responsibilities?


Yes, 55%

No, 44%

Not sure, 2%

Delayed Health Care Because of Caregiving

Yes, 38%

No, 55%

Not sure, 7%

Delayed Health Care Because of Caregiving

Dementiacaregivers

Non-dementiacaregivers20%

36%*

30%

12%

2%

14%

28%33%

19%*

6%*

Excellent Very good Good Fair Poor

Self-Reported HealthDementia caregivers Non-dementia caregivers


RESOURCES


Dementia Caregivers Are More Likely to Be Interacting with Their Loved One’s Healthcare Provider and a Majority Are Satisfied with the Information They Are Provided

17

Q10 : How satisfied are you with the amount of information you receive from your loved one’s health care provider(s) about your loved one’s condition? (n=1112)Q11 : How satisfied are you with the amount of information you receive from your loved one’s health care providers about how to care for your loved one? (n=1112) * Indicates a significant difference at a 95% confidence interval

26%

17%

30%

32%

33%

31%*

8%

7%

2%

3%

2%

11%



Extremely satisfied Very satisfied Somewhat satisfied Not too satisfied Not at all satisfied Do not interact with HCP

25%

17%

31%

27%

31%

30%*

8%

9%

2%

3%

2%

14%



Satisfaction with Information Received

About Loved One’s Condition from

Healthcare Provider

Satisfaction with Information Received

About How to Care for Loved One from Healthcare Provider


However, Caregivers for Those with Dementia Are Also More Likely to Be Seeking Information and Resources in General and Are More Likely to Do so From a Variety of Places

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Q9 : Where do you typically go to find resources to help you care for your loved ones? * Indicates a significant difference at a 95% confidence interval

50%*

41%*

40%*

38%

35%*

28%*

26%

23%*

23%*

22%*

18%

11%*

5%

42%

32%

29%

37%

23%

19%

17%

9%

14%

20%

6%

17%*

Talking to friends and family

Online websites such as WebMD

Loved one’s health care provider(s)

Google searches or other online search engines

Online websites, guides, and forums for caregivers…

My own health care provider(s)

Alzheimer’s Association

Other health care providers and medical professionals

Caregiver support groups

AARP’s Family Caregiving website

Local or state support services

Department of Veterans Affairs

I do not look for information on caregiving

Places Caregivers Typically Go for Resources on CaregivingDementia caregivers Non-dementia caregivers


IMPLICATIONS


ImplicationsCaregivers of those with dementia or other cognitive impairments are a unique subset of caregivers with unique needs. They are, on average, more involved in the care of their loved one on a weekly basis, and have had to make more adjustments and changes to their lives as a result of their caregiving. As such, they are in greater need of personal and professional support and resources to manage caregiving than other caregivers. Indeed, the data show that they are more likely to be looking for caregiving resources and look at resources in a greater variety of locations than other caregivers.

Though caregivers of those with dementia report being in good health and engage in positive coping behaviors, they are also more likely to admit to negative health consequences as a result of caregiving, such as weight loss, increased mental health issues, increased social isolation, and delaying medical care for themselves. These caregivers would benefit most from products and services that make it easier to take care of themselves and stay socially connected while caring for others.

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AARP.ORG/RESEARCH | © 2018 AARP ALL RIGHTS RESERVED AARP RESEARCH 21

About AARPAARP is the nation’s largest nonprofit, nonpartisan organization dedicated to empowering Americans 50 and older to choose how they live as they age. With nearly 38 million members and offices in every state, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands, AARP works to strengthen communities and advocate for what matters most to families with a focus on health security, financial stability and personal fulfillment. AARP also works for individuals inthe marketplace by sparking new solutions and allowing carefully chosen, high-quality products and services to carry the AARP name. As a trusted source for news and information, AARP produces the nation's largest circulation publications, AARP The Magazine and AARP Bulletin. To learn more, visit www.aarp.org or follow @AARP and @AARPadvocates on social media.

http://www.aarp.org/


APPENDIX


Demographics

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Dementia Caregivers

Non-Dementia Caregivers

n=711 n=401Age

18-34 35% 33%35-49 29% 24%50-64 28% 32%65+ 9% 11%

GenderMale 37% 42%Female 63% 57%Transgender 1% 1%

RaceAmerican Indian or Alaska Native 2% 4%Asian American/Pacific Islander 7%* 3%Black or African American 16% 16%White 73% 74%Other 5% 8%

Hispanic/Latino – Percent Yes 22% 22%Marital Status

Married 55%* 44%Living with partner 10% 8%Widowed 2% 4%Divorced or separated 10% 11%Never married 22% 33%*

Dementia Caregivers

Non-Dementia Caregivers

n=711 n=401Education

High school graduate or less 19% 23%Vocational or some college 33% 40%College graduate (4 year) 32%* 24%Post graduate study or degree 17% 12%

Employment statusEmployed full time 55%* 37%Employed part time 16% 15%Retired 10% 15%Not employed for pay 4% 6%Disabled 5% 10%*Homemaker 9% 13%Other 1% 5%*

IncomeLess than $25,000 15% 23%*$25,000 to $50,000 27% 38%*$50,000 to $75,000 17% 14%$75,000 to less than $100,000 12% 10%$100,000 or more 28%* 15%



Biggest Challenge of Caring for Someone with DementiaThinking about your caregiving experience as a whole, what has been the biggest challenge in caring for someone with dementia or other cognitive impairment? %

Emotions [NET] 32%

Seeing them decline/deteriorate/get worse/fade away (compared to how you knew them) 6%

Having/Maintaining patience 5%Being understanding/understanding them/their needs 3%Dealing with/Accepting the changes 3%The emotional aspect/emotionally draining 2%They are not getting better/Not being able to help 2%It is/Makes me sad 2%Their mood (swings) 2%Seeing them suffer/struggle 1%Being positive/a positive influence 1%Worrying 1%Feeling guilty 1%The mental toll/stress 1%Staying strong/Strength required 1%Not getting/I get frustrated 1%They get angry 1%They get scared 1%Keeping calm/not getting angry/annoyed 1%They get aggressive/violent/mean 1%

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Caring for person [NET] 26%

Helping/getting them to understand (what is happening/how to do things/etc) 5%

Communication 3%Making sure they are ok/have all they need/taking care of them 3%Cooperation/Interaction 2%Getting/Reminding them to eat 2%Meds/taking meds (correctly) 2%The work/activities 2%The attention they require 1%Getting/Reminding them to bathe 1%Keeping them safe 1%They get confused 1%They are/act like a child/toddler 1%Their behavior/attitude 1%(Worry about) Wandering 1%No/less rest/sleep /Tired 1%Keeping them engaged/alert/finding things to do 1%


Biggest Challenge of Caring for Someone with Dementia

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Thinking about your caregiving experience as a whole, what has been the biggest challenge in caring for someone with dementia or other cognitive impairment? (Continued

%

Time [NET] 16%

Time/time required to assist/not having enough time 7%

Not having time for myself 4%Balancing (between family/person's care/personal time/job) 4%24 hours care/cannot be left alone 3%Impact on my social life 1%

Memory [NET] 17%Forgetfulness/They don't remember/forget 7%Not being recognized/My mother not recognizing me 7%Having to repeat/explain things/information/myself 2%Helping/seeing them try to remember 1%(Their) Repetition of the same thing/idea/activity/question 1%Watching them slowly forget/lose their memory/their mind go 1%

Other aspects [NET] 14%

Good/Nice/Great (unspec.)/I like it/Good experience 6%

No/Not enough help from family members/caring for them alone 1%Change in relationship 1%Money/Financial aspect/Taking care of their finances 2%The uncertainty/unpredictability (of their condition) 2%Own health issues 1%Everything 1%

Other 9%

Don't know 1%

Nothing/None/No answer 5%


Oscar Anderson, AARP [email protected]

For media inquiries, please contact [email protected]

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caring for people with dementia: caregivers' experiencesdisease progression of dementia. total....

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