W
ELCOME
TO THE
C
AREGIVING
Y
OUTH
I
NSTITUTE
C
ONFERENCE
Melinda S. Kavanaugh, PhD, LCSW
“if someone says, “How’s your mom doing,” I’ll
say, “Oh, she’s doing all right.” But maybe it’d
be nice if someone asked me how I was
Social Worker at Huntington’s Disease Center of Excellence
•
Home visits
•
Clinic visits
Children and Teens providing care to a parent with
Huntington’s disease
(Kavanaugh, MS, 2014; Kavanaugh, MS, Noh, HJ., and Studer, LS, 2015)• Cross-sectional mixed method interview • N= 40 caregivers, ages 12-20
• Utilized chapters and centers with the HDSA across US
Pilot exploration of the caregiving experience in families
affected by ALS
(unpublished pilot data)• Cross-sectional mixed method interview • N = 16, ages 8-19
•
Over 30,000 in US; over 200,000 at risk
•
Health care providers have little familiarity with HD
•
15-20 year trajectory
•
Complex, stigmatizing symptoms
•
Symptoms often begin late 30’s early 40’s
– prime of life
•
Approximately 5,600 people are diagnosed every year –
with over 30,000 living with ALS
•
Trajectory anywhere from 2-20 years, but majority average
2 to 5 years from onset
•
Average age between 40 and 70
•
Loss of muscle control –
•
speech, swallowing and breathing
•
Often extremely costly
HD
(N=40) • Primary caregiver = 10 • Caregiving average: • 4.3 years • Caregiving tasks • Providing company = 34* • Helping parent walk = 31 • Give medication = 12 • Fed parent=18• Household chores = 36 • Talk to dr for parent = 13 • Toileting =11
Feel they have a lot of responsibility = 36
• General health = fair or poor (n=24) • Depression - Mean = 11
ALS
(N=16)• Primary caregiver = 1
• Caregiving average
• less than a year
• Caregiving tasks
• Dress/undress parent = 7 • Keep them company = 13* • Help them eat = 10
• Use communication equipment = 7 • Help with suction = 6
• Toileting = 4
Feel they have a lot of responsibility = 9
HD
HD average number 11
• involuntary movements (N=38) • Trouble swallowing (N=23) • Forgetfulness (N=29) • depressed mood (N=27), • hard to get along with(N=22)
• Incontinent (N=17)
ALS
ALS average number 6
• Drooling (N=11) • Choking (N= 14)
• Loss of voice (N= 13)
• Unable to feed themselves
(N=10)
• Cannot move self (N=12) • Pain (N=11)
•
Conflict - HD
• 93% (N=37) reported high levels of conflict with the ill parent • Little conflict reported in ALS
•
School problems
• were absent from school “at least sometimes • 44% (9) ALS; 28% (12) HD
• were too worried to concentrate “at least sometimes” • 50% (8) ALS; 65% (26) HD
• missed school activities “at least sometimes” • 42% (5) ALS; 46% (19) HD
How do they know what to
do?
HD - 80% said noone told them how to do any caregiving task
“I felt like I was just winging it”
ALS – 74 % said noone told them what to do
“I just watched and tried to do what my mom did”
Information about the
disease and symptoms
HD – 68% - stated they wish they had more information about HD – including from the HDSA
“ People can talk to me about it and give advice for easier and better solutions to caregiving”
ALS - 85% stated they did not have
enough information either about ALS, or caregiving for ALS – including lack of information from the ALS association
Emotional
support
Treat family normal Care about caregiver Understanding attitude Support groups Friends who get itInstrumental
support
Help with actual caregiving Give information and advice Others spend time with parent•
Symptoms and tasks – which are more complicated
• They clearly need training
• Physically taxing to youth caregiver
• Psychiatric in nature vs physical symptoms
•
Long term vs short term acute diseases
• HD much longer term • ALS shorter more acute
•
Need for normalcy, less isolation and more support
• Development of programs with other young carers, run by people
• Pearlin, L., Mullan, J., Semple, M., & Skaff, M., (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583-594.
• Kavanaugh, MS. (2014). Children and adolescents providing care to a parent with Huntington’s disease: Disease symptoms, caregiving tasks and young carer well-being. Child and Youth Care Forum, 43(6), 675-690.
• Kavanaugh, MS., Noh, H., and Studer, L (2015). “It’d be nice if someone asked me how I was doing. Like, ‘cause I will have an answer.”
Exploring support needs of young carers of a parent with Huntington’s disease. Vulnerable Children and Youth Studies, 10(1), 12-25
• Huntington’s Disease Society of America (HDSA). 2015. HD Fast facts.
www.hdsa.org
