Family Caregiver Needs Assessment 2014-2015: A Deeper Look Presentation to the Maryland Caregivers Support Coordinating Council Amy Fuhrmann, M.S., Consultant Counseling Psychology University of Maryland 4.2.15

Differences for Male and Female Caregivers

• 33% of Female Caregivers provided care for 10+ years, compared with 22% of Male Caregivers

• Female caregivers report statistically significant, higher levels of physical fatigue, emotional hardship, and financial hardship than male caregivers

• Male caregivers tended to be older (15% of male caregivers were 75 or older, compared with only 6%)

• Female caregivers were more likely to be divorced (14% compared with 4%)

• More non-white female caregivers (31% compared with 23%)

n= 1,828 (data as of 3/17/15)

13.30%

85.70%

0.10% 1.00%

Gender

Male Female

Differences Age of Caregiver • Average Age of Caregiver: 57

• 18 to 34– tend to be more ethnically diverse (45% non-white), have lower income (56% less than $50K household income) take care of a mother or grandparent (37%), whose primary condition is Alzheimer’s (21%), Intellectual Disability (15%), or Chronic Disease (13%)

• 35 to 49– tend to be white (59%), have more income (51% more than $50K household income), take care of a child (33.4%), whose primary condition is Intellectual/Developmental Disability (29%), Alzheimer’s (17%), or Chronic Disease (17%)

• 50 to 64– tend to be white (71%), have more income (78% more than $50K household income), take care of a mother (39%) or child (23%), whose primary condition is Alzheimer’s (26%), Chronic Disease (16%), or Intellectual/Developmental Disability (17%)

• 65 to 74– tend to be white (77%), have more income (76% more than $50K household income), take care of a spouse (29%) or Mother (34%), whose primary condition is Alzheimer’s (26%), Mobility (24%), or Chronic Disease (17%)

• 75+ - tend to be white (77%), have moderate resources (63% more than $50K household income), take care of a spouse/partner (73%), whose primary condition is Alzheimer’s (34%), Chronic Disease (14%), or Mobility (24%)

3.70%

18.00%

53.30%

17.90%

7.10%

Age

18 to 34 35 to 49 50 to 64

n= 1,828 (data as of 3/17/15)

Differences By Age of Care Recipient

8.30%

14.70%

4.90%

8.30%

12.30%

23%

28.40%

0.00%

5.00%

10.00%

15.00%

20.00%

25.00%

30.00%

Age of Care Recipient

Under 18 18 to 34 35 to 49 50 to 64

65 to 74 75 to 84 Over 85

• Under 18: • 63 % have Intellectual/Developmental Disability • Caregivers reported the most need for financial support

(68 %) and a break (62 %) • 18 to 34:

• 63 % have Intellectual/Developmental Disability • 81 % of those 18 to 34 have received care for ten or more

years • 35 to 49:

• 20 % have Mental Illness • 50 to 64:

• 23 % have a Chronic Disease (e.g., cancer) • 65 to 74:

• 26 % have Alzheimer’s/Dementia (22 % Chronic Disease) • 75 to 84:

• 41 % have Alzheimer’s/Dementia (25% Chronic Disease) • 85+:

• 39 % have Alzheimer’s/Dementia (24 % Mobility)

Differences By Race/Ethnicity • African American/Black persons twice as likely to care for someone with HIV/AIDS and more likely than any other group to provide constant care.

• Non-white caregivers identified more need for financial support.

• Non-white caregivers identified a greater need for information about government services: White 24 %; Black 33 %; Asian 36 %; Native American 33 %; Other 29 %

• More male caregivers are white than Black, Asian, and “other” groups (2 of 6 Native American caregivers – 33% -- were men)

• Non-white caregivers reported lower incomes. Under $50K White 22%; Black 45%; Asian 23%; Native American 50%; Other 29%

Race/Ethnicity of Caregiver

Baltimore City

White – 80 % Black – 10 % Asian – 2 % Native American - .4 %

White – 93 % Other – 7 %

White – 31% Black – 60 % Asian – 1 %

White – 68% Black – 27 % Asian – 2 %

White – 76% Black – 20%

White – 74% Black – 21% Asian – 3%

White – 95% Black – 2.3%

White – 79% Black – 14%

White – 82% Black – 18%

White – 42% Black – 52% Asian – 2 %

White – 92% Asian– 2%

White – 100%

White – 86% Black – 8 % Asian – 2 %

White – 70 % Black – 15 % Asian – 1% Native American - 1%

White – 75% Black – 13%

White – 79% Black – 6% Asian – 1%

White – 34 % Black – 55 % Native American - 1%

White – 85% Black – 4% Asian – 4% Native Amer.- 4%

White – 50% Black – 44% Asian – 6%

White – 70% Black – 20% Asian – 5%

White – 77% Black – 17% Asian – 3%

White – 80 % Black – 7 % Native American - 3%

White – 66% Black – 29%

White – 90% Black – 7%

Awareness of the

• Only 4% of 18 to 34 year olds knew of the Council, while 21% of 75+ did: Systematic increase in awareness with age of caregiver.

• Of people who are aware of the Council, the most were female (90%), care for their mother (39%), followed by a spouse (18%), child (17%), and father (10%). Most provided long-term care (80%) for someone 85+ (34%), 75 to 84 (25%), or 18 to 34 (14%). Most common condition of care recipient was Alzheimer’s (32%), blindness (17%), and Intellectual/Developmental Disability (12%)

• Of people who were NOT aware of the Council, the most were female (85%), care for their mother (33%), followed by a child (23%), spouse (17%), and father (9%). Most provided long-term care (81%) for someone 85+ (28%), 75 to 84 (23%), or 18 to 34 (15%). Most common condition of care recipient was Alzheimer’s (24%), Intellectual/Developmental Disability (18%), and Chronic Disease (16%)

Awareness of the Maryland Caregivers Support Coordinating Council (CONTINUED)

0%

15%

10%

12%

8%

10%

13% 13%

6%

0%

2%

4%

6%

8%

10%

12%

14%

16%

Awareness of Council by Condition

AIDS/HIV Alzheimer's Blindness Chronic Disease Intellectual

Mental Illness TBI/PTSD Mobility Stroke

Differences from 2002 to 2015 Assessment

2002 – 679 respondents

• 47 % High School Education or Below

• 45 % Provide Constant Care

• 45 % Need Financial Support

• 56 % Earn less than $50K

• 35 % Care for Child, 22 % Spouse

• 26 % Care Recipients had Developmental Disability

• 47 % Work Full-Time

• 20 % Are Retired

2015 – 1828 respondents • 10 % High School Education or Below

• 37 % Provide Constant Care

• 52 % Need Financial Support

• 27 % Earn less than $50K

• 24 % Care for Child, 16 % Spouse

• 18 % Care Recipients had Developmental Disability

• 65 % Work Full-Time

• 24 % Are Retired

*reported differences are all statistically significant

Alzheimer’s Caregivers • 22% African American/Black

• 53% of care recipients were mothers or mothers-in-law (21% spouse)

• 25% were from Anne Arundel County

• 48% of caregivers had been providing care for 1-4 years

• 51% of caregivers reported considerable or great emotional hardship

• 31% of caregivers reported regular or great financial hardship

• 44% identified financial support as a need; 48% needed a break; 23% needed help understanding how to pay for nursing home; 26% needed information about government services

• 15% were aware of the Council before the survey, 21% were aware of respite care

Caregivers for those with Intellectual/Developmental Challenges

• 91% female; 16% African American/Black

• 86% of care recipients were children of caregiver

• 21% were from Montgomery County (15% Baltimore County)

• 82% of caregivers had been providing care for 10+ years

• 41% of caregivers reported considerable or great emotional hardship

• 41% of caregivers reported regular or great financial hardship

• 54% reported financial support as a need; 51% needed a break; 29% needed legal help; 26% needed information about government services

• 8% were aware of the Council before the survey; 32% aware of Respite Care

Caregivers of Veterans • 36% cared for a spouse; 38% for a father or father-in-law

• 33% of recipients had cognitive impairment (Alzheimer’s); 25% had chronic disease; 20% had mobility challenges

• 48% of caregivers had provided care from 1-4 years

• 40% reported considerable or great emotional hardship

• 51% needed a break; 27% needed information about government services

• 70% said the government can provide more information about services available

• 13% were aware of the Council; 16% were aware of Respite Care

• 20% were from Anne Arundel County (15% from Baltimore County)

Under $50K vs. Over $50K Income

Under $50K Over $50K

• 26% Alzheimer’s; 18% Chronic Disease; 15% Intl./Dvlp Disability

• 24% Alzheimer’s; 15% Chronic Disease, 18% Intel./Dvlp Disability

• 44% regular or great financial hardship (63% need $ support)

• 27% regular or great financial hardship (40% need $ support)

• 47% need free time/break • 47% need free time/break

• 36% need info about gov. services • 23% need info about gov. services

• 14% were aware of Council; 28% aware of respite care

• 11% were aware of Council; 24% aware of respite care

• 15% from Wicomico County; 12% Anne Arundel; 10% Baltimore City

• 14% Montgomery County; 14% Anne Arundel; 13% Baltimore City

• 37% African American/Black • 17% African American/Black

Respite Care

• 21% of those aware care for someone with Alzheimer’s; 22% Intellectual/Dvlp. Disability; 16% Chronic Disease (almost same percentage unaware)

• 48% of unaware reported need for a break/free time

• 8% of those aware were male vs. 16% unaware

• 30% aware were African American/Black vs. 20% unaware

Next Steps

• Recommendations for data use:

– Brochures

– Findings on redesigned website or reprinted brochures

– Providing partners with results relevant to them

• Discussion:

– How can this data help to make the case for funding or legislative purposes?

– What other questions need to be asked and answered through our data?

– How can this data best be available to you and our partners in the state?