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LONG TERM CARE CHOICES IN HUNTINGTON’S DISEASE
Teresa Tempkin, RNC, MSN, ANP
HDSA Center of Excellence UC Davis Medical Center
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
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
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?
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?
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.
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.
Community Care Alternatives
_______________________________________________________________________________I&R* ADC** Home care Respite Assisted Living/B&C Skilled Nursing Hospice
*Information and Referral**Adult Day HealthCase management
TransportationNutrition ServicesSupport Groups
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.
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.
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
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.
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.
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.
Adult Day Care
Services may include: Care and supervision Activities Nutritious meals Transportation Recreation and exercise Case management
Adult Day Care
Nursing Care Education Family counseling Assistance with activities of daily
living Occupational, speech and physical
therapies
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.
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.
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.
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.
Home Care
Non-skilled services: Include activities such as assistance
with personal care; bathing, dressing, grooming, toileting.
Meal preparation. Light house keeping Shopping
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.
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.
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.
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.
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.
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.
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.
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.
How to Choose a Nursing Home
Getting Started: Cost Location Appropriate Level of Care Quality of Care Reputation Physical Plant Your “gut” feeling
Choosing a Nursing Home
Plan Early Get Help Talk to Others Visit local facilities Review survey data Ask questions
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
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
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’
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.
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.
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.
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.
Contacting Resources
Don’t hesitate to ask for help. Determine which services you are
eligible for.
Ask for advice on eligibilty and funding
Northern California HD Resources
HDSA Center of Excellence UC Davis
Terry Tempkin (916) 734-6278
Rick Henry (916) 734-6277
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
