WELCOME APRIL 23, 2015 CAREGIVINGYOUTH INSTITUTE CONFERENCE TO THE

Transcription

1 WELCOME TO THE CAREGIVINGYOUTH INSTITUTE CONFERENCE APRIL 23, 2015

2 Melinda S. Kavanaugh, PhD, LCSW Helen Bader School of Social Welfare

3 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 doing. Like, cause I will have an answer.

4 Social Worker at Huntington s Disease Center of Excellence Home visits Clinic visits Support groups

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6 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 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and centers with the HDSA across US Pilot exploration of the caregiving experience in families affected by ALS (unpublished pilot data) Cross-sectional mixed method interview N = 16, ages 8-19 Collaboration with WI chapter of the ALSA

7 Over 30,000 in US; over 200,000 at risk Health care providers have little familiarity with HD year trajectory Complex, stigmatizing symptoms Symptoms often begin late 30 s early 40 s prime of life (HDSA, 2015)

8 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 (ALSA, 2015)

9 Coping

10 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 Depression - Mean = 7

11 HD HD average number 11 ALS ALS average number 6 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) 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)

12 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

13 How do they know what to do? Information about the disease and symptoms 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 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

14 Friends who get it Understanding attitude Treat family normal Give information and advice Instrumental support Emotional support Support groups Help with actual caregiving Others spend time with parent Care about caregiver

15 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 who know the disease

16 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), 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), 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), Huntington s Disease Society of America (HDSA) HD Fast facts. Amyotrophic Lateral Sclerosis (ALS) Facts

17 Melinda Kavanaugh, PhD, LCSW Helen Bader School of Social Welfare University of Wisconsin-Milwaukee Milwaukee, WI