Team-based care of HD families
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Dr. Martha Nance's presentation for the Local Practitioner's Program at HSG 2015 covers what makes up the ideal HD care team.
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Team-based care of HD families
- 2. Team-based care of HD families Martha A. Nance MD HCMC HDSA COE
- 3. The long view Birth First awareness of risk for HD (parent diagnosed) Death, age 55 Predictive testing Affected parent dies; awareness of symptoms Diagnosis of HD Completes education Marriage First child born Second child born Disabled from work Unable to drive Needs 24-hour care Life milestones Disease milestones Placed in long-term care facility
- 4. Care-defining characteristics of HD Neurologic disease Adult-onset disease Chronic disease Genetic disease • Movement disorder • Cognitive disorder • Psychiatric disorder • (usually mid-adulthood) • (occasionally childhood or old age) • 15+ year course • Degenerative, ultimately fatal • Autosomal dominant • Family disease
- 5. A really good book
- 6. The ideal HD care team Patient Family Neurologist/ Psychiatrist Neuro- psychologist Psychologist Social worker Nurse/care coordinator Genetic counselor Physical therapist Occupational therapist Speech therapist Dietitian Research nurse And: general practitioner, dentist
- 7. Management of HD Health professional Role in HD management Neurologist Team leader, movement disorder, initiate referrals Psychiatrist Psychiatric/behavioral symptoms Psychologist Behavioral symptoms; family counseling Neuropsychologist Cognitive assessment and recommendations Speech therapy Assess, treat dysphagia, communication problems Physical therapy Gait disorder, assistive equipment, exercise program Occupational therapy Safety, functional assessment, equipment Dietitian Healthy eating; altered food textures; high calorie foods Social worker Identify community resources; assist with legal, financial issues Genetic counselor Educate about genetic aspects, discuss testing options
- 8. Management of HD, continued Type of professional Role in HD management General practitioner General, age-appropriate care Dentist Age-appropriate care Lay organization Support for patient and family
- 9. Genetic counseling ? ? 17-20 17-22 19-24 18-23 22-40 17-41 18-48 23-44Predictive test? Prenatal test? Preimplantation test? ?
- 10. Neuropsychology • Assist with early diagnosis – Cognitive changes often precede motor • Characterize cognitive challenges, strengths • Suggest strategies to encourage success, minimize conflict • Disability (cognitive work; unawareness) • (Monitor progression)
- 11. Psychology Birth First awareness of risk for HD (parent diagnosed) Death, age 55 Predictive testing Affected parent dies; awareness of symptoms Diagnosis of HD Completes education Marriage First child born Second child born Disabled from work Unable to drive Needs 24-hour care Life milestones Disease milestones Placed in long-term care facility
- 12. Social work services Birth First awareness of risk for HD (parent diagnosed) Death, age 55 Predictive testing Affected parent dies; awareness of symptoms Diagnosis of HD Completes education Marriage First child born Second child born Disabled from work Unable to drive Needs 24-hour care Life milestones Disease milestones Placed in long-term care facility
- 13. Speech pathologist and dietitian • Morbidity and death in HD are generally related to dysphagia – Weight loss – Aspiration pneumonia – Elective not-eating • People with HD should have an opinion about a feeding tube! – This is often not specifically addressed in generic Living Wills
- 14. Speech pathologist and dietitian • Eating is fun! – People need to be given permission to eat! – Altering food textures allows safe eating
- 15. Speech pathology • Modified barium swallow study – Educate pt/family about dysphagia in HD – Suggest functional strategies for safe swallow • Clinical swallow evaluation – Monitor changes over time • Triggers for re-evaluation: weight loss, coughing, choking, pneumonia
- 16. Dietitian • Takes a diet history – May identify psychosocial issues – Food obsessions – Misunderstandings about healthy foods • Counseling about healthy eating – May need increased calorie intake to maintain weight – Food textures to avoid • Triggers for re-evaluation: weight loss
- 17. Speech pathologist • Involved also in assessment of communication • An occasional patient benefits from augmentative communication device • Simple word boards may be more helpful than computerized devices later in the disease
- 18. Physical therapy • Gait evaluation and recommendations • Exercise, range of motion activities – Be careful about recommending vigorous aerobic activities (not proven to be safe or beneficial) • Gait assistive devices? – Occasional patients benefit from a walker
- 19. Occupational therapy • ADL/safety assessment, independence • Home equipment – Small devices for the kitchen – Bathroom safety – Stairs, etc • Seating equipment • Bedroom safety in late stages
- 20. Free! On-line! Volume 2, #1 (2012): A series of articles reviewing the published literature on PT, OT, speech, dietary in HD management
- 21. Shoulson-Fahn Total Functional Capacity Scale Work •3-regular work •2-difficulties •1-volunteer •0-none Money •3-manages independently •2-manages with help •1-makes simple purchase •0-unable Chores •2-full capacity •1-impaired •0-unable ADLs •3-independent •2-needs some help •1-assists caregiver •0-does not participate Residence •2-home •1-home with services •0-long term care Stage 1 (11-13)—work, relationships, diagnosis Stage 2 (7-10)—diagnosis, driving, work, enjoyment Stage 3 (3-6)—transition time: personal help needed Stage 4 (1-2)—in-home help vs. nursing home Stage 5 (0)—dignity in late stages; terminal/Hospice
- 22. The long view Birth First awareness of risk for HD (parent diagnosed) Death, age 55 Predictive testing Affected parent dies; awareness of symptoms Diagnosis of HD Completes education Marriage First child born Second child born Disabled from work Unable to drive Needs 24-hour care Life milestones Disease milestones Placed in long-term care facility
- 23. Challenges in late stage HD • Neurologists tend to abandon patients when they get to the nursing home • “there’s nothing I can do” • Young age, movement issues, dysexecutive function, progression combine to distinguish people with HD from others in LTC
- 24. Life after LTC placement • Small number of group homes, LTC facilities for HD exist (several in MN) • (in MN and the Dakotas) social workers can do inservice on-call to any LTC facility • Involve PT, OT, speech, dietary, chaplain, psychology • HDSA has recently completed a guidebook directed towards LTC staff • Don’t forget hospice! Dying is part of life, and if anticipated, can be celebrated, or at least comfortable
- 25. How do you create a team? • Be an enthusiastic leader • Give a presentation on HD and see who attends • Identify “go-to” therapists/nurses/social workers • Try to find someone in mental health and genetic counseling to support your efforts • Schedule one afternoon/month as “HD clinic” • Have HD resource materials on hand • Join the HSG!
- 26. Principles of care NEVER “nothing I can do” Care from beginning to end Support and education Proactive care Nobody can “do HD” alone