1. LONG TERM CARE CHOICES IN HUNTINGTON’S DISEASE Teresa Tempkin, RNC, MSN, ANP HDSA Center of Excellence UC Davis Medical Center

2. The burden of caregiving can be overwhelming for family and friends Caregiving responsibilities can go on for many years and increase in complexity as HD progresses Taking stock and getting help can ease the caregiving burden

3. Caregiving Tasks Managing medical/psychiatric crises Control of symptoms Carrying out of prescribed regimes Physical care tasks/supervision Adjusting to changes in the course of the disease

4. Assessing Your Needs What is my loved one’s level of functioning? What type of help does my loved one need at this time? How do I pay for the help? What days/times do I need help? What assistance can I provide?

5. Assessing Your Needs What assistance can my family/friends provide? What specific type of help is needed? Who can help me find the assistance I need?

6. Informal Care Involves the help of family, friends, neighbors, or church members who can share the responsibilities of caregiving and alleviate some of the burden of care.

7. Informal Care Write down the names and phone numbers of this network of family and friends. Include a list of tasks they are willing and able to assist you with. Make a weekly schedule of things to do and include them.

8. Community Care Alternatives _______________________________________________________________________________ I&R* ADC** Home care Respite Assisted Living/B&C Skilled Nursing Hospice *Information and Referral **Adult Day Health Case management Transportation Nutrition Services Support Groups

9. Information and Referral Information services that help identify what services exist. Can serve as a point of entry for community based services. Staff members can provide assistance in determining what services are needed and where to find them.

10. Information and Referral Many community agencies have a lack of knowledge about the special needs of HD families…..however…they are knowledgeable about area resources. Families may need to provide some HD specific information to aid in selecting the appropriate resources.

11. Sources of Information and Referral HDSA Centers of Excellence Caregiver Agencies Senior Services/Area Agencies on Aging Community Mental Health Agencies Public Health Services County Social Service Agencies

12. Case Management Services Provide assistance in both locating and managing services for on-going needs. Professional case managers usually have a background in counseling, social work or a related health care field. They are trained to assess your individual situation and to implement and monitor an on-going plan of care.

13. Case Management Services They work with you to arrange services such as transportation, meals, day care, and nursing home care. Additionally, case managers can help determine eligibility for entitlement programs. Some public agencies have case managers as part of their services. Private agencies charge a fee.

14. Adult Day Care Offers participants the opportunity to socialize, enjoy peer support, and receive health and social services in a safe environment. Many participants delay nursing home admission by attending daily adult day health care.

15. Adult Day Care Services may include: Care and supervision Activities Nutritious meals Transportation Recreation and exercise Case management

16. Adult Day Care Nursing Care Education Family counseling Assistance with activities of daily living Occupational, speech and physical therapies

17. Adult Day Care Adult day care works well for caregivers who can’t stay home all day to provide care, supervision and companionship. Medicaid, and some private insurances pay for adult day care services.

18. Transportation Services Provides transportation to and from medical appointments, day programs and other services. Provided by volunteer drivers, bus, taxi or specially equipped vans. Generally a fee for services In many communities need outstrips availability.

19. Nutrition Programs Provides meals – usually lunch in a group setting. Often operated by churches, synagogues, housing projects, senior centers and community centers. Generally a nominal fee or income eligibility requirements.

20. Home Care Skilled and non-skilled services. Skilled services include those activities that would need to be provide by a licensed individual – RN, PT, OT, or ST. Generally provided on a limited basis (as long as the skilled need exists) Re-imbursed by Medicare, Medicaid, and many private insurances on a limited basis.

21. Home Care Non-skilled services: Include activities such as assistance with personal care; bathing, dressing, grooming, toileting. Meal preparation. Light house keeping Shopping

22. Home Care Some features of non-skilled services (such as bathing and dressing) are included with skilled care when ordered by a physician. These non-skilled services end when the skilled need ends. On-going in-home care without a skilled need is generally financed privately.

23. Respite Care Offers relief for family and friends so they can ‘take a break’. Respite services are generally provided in home, at adult day health programs or in nursing homes. Generally offered overnight or for a weekend. Some limited coverage with private insurance and entitlement programs.

24. Hospice Care Provides special services and therapies to individuals who are terminally ill and their death is reasonable expected within 6 months Hospice services need to be ordered by a physician. Hospice attempts to improve the quality of life by controlling symptoms and restoring dignity.

25. Hospice Care Team approach Provides medical, nursing, social, and emotional care to both the patient and family/caregivers. Covered by Medicare, Medicaid, and many private insurance plans.

26. Support Groups Many geographic areas of the country served by HDSA support groups. Valuable source of support and information on HD. Provides caregivers with support and understanding from individuals who have similar concerns. Provides opportunities for education and socialization.

27. Assisted Living/Board and Care Congregate living arrangements for people who are independent in physical care, but need supervision. Financed by SSI payments or private funds. May be difficult to find an appropriate setting for a young HD individual with behavior problems.

28. Nursing Homes Skilled and non-skilled admissions. Long term housing and medical care for people who are dependent on others to provide for their individual needs.

29. Skilled Care Requires certification by a physician that skilled services (RN, PT, OT, ST) are medically necessary. Usually short term – less than 100 days per calendar year (Medicare benefit) People who need nursing care longer than that convert to non-skilled time covered by Medicaid or private funds.

30. How to Choose a Nursing Home Getting Started: Cost Location Appropriate Level of Care Quality of Care Reputation Physical Plant Your “gut” feeling

31. Choosing a Nursing Home Plan Early Get Help Talk to Others Visit local facilities Review survey data Ask questions

32. Terry’s Tips Choose a facility easy for you to get to Establish a relationship with the staff at the facility – how willing are they to work with you about your loved ones’ special needs? Look at how the residents’ are being treated – and how the staff treats each other

33. Terry’s Tips Contact NCC HDSA or the Center of Excellence to help you with educating the nursing homes Make your loved one’s room as personal as the facility will allow Take your loved one “out” as often as practical

34. Terry’s Tips Its often very difficult to make the transition from home to institutional care. One of the positive aspects of relinquishing the care giving to others is that you can resume your previous relationship with that person – instead of spending all your time being their ‘nurse’

35. Contacting Resources Be clear about what you need. Because HD changes, your needs will vary depending on your individual circumstances, and as your HD picture changes. Enlist assistance form informal sources of help if possible.

36. Contacting Resources Begin looking for resources before your situation becomes overwhelming. Plan ahead…for any eventuality. Write down all the information you are given. Document who you talk to and what information they provide you.

37. Contacting Resources When making calls have specific information such as physician information, insurance coverage, diagnostic information, and care needs. Be assertive and specific about your needs. Don’t terminate the call until you are clear about what the next step is.

38. Contacting Resources Many people you encounter will not be familiar with the specific needs of HD families. Contact your nearest HDSA chapter or Center of Excellence for assistance in providing agencies with information.

39. Contacting Resources Don’t hesitate to ask for help. Determine which services you are eligible for. Ask for advice on eligibilty and funding

40. Northern California HD Resources HDSA Center of Excellence UC Davis Terry Tempkin (916) 734-6278 Rick Henry (916) 734-6277

41. Northern California HD Resources HD Clinic at UC San Francisco Sarah Lin (415) 476-6100 ext 52689 NCC HDSA Chapter Helpline (916) 492-8516 1-888-8CUREHD