LONG TERM CARE CHOICES IN HUNTINGTONS DISEASE

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LONG TERM CARE CHOICES IN HUNTINGTONS DISEASE

• Teresa Tempkin, RNC, MSN, ANP
• HDSA Center of Excellence
• UC Davis Medical Center

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• 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

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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

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Assessing Your Needs

• What is my loved ones 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?

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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?

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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.

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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.

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Community Care Alternatives
_________________________________________________
______________________________ IR ADC
Home care Respite Assisted Living/BC
Skilled Nursing Hospice Information and
Referral Adult Day Health Case
management Transportation Nutrition
Services Support Groups
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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.

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Information and Referral

• Many community agencies have a lack of knowledge
  about the special needs of HD families..howevert
  hey are knowledgeable about area resources.
  Families may need to provide some HD specific
  information to aid in selecting the appropriate
  resources.

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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

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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.

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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.

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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.

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Adult Day Care

• Services may include
• Care and supervision
• Activities
• Nutritious meals
• Transportation
• Recreation and exercise
• Case management

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Adult Day Care

• Nursing Care
• Education
• Family counseling
• Assistance with activities of daily living
• Occupational, speech and physical therapies

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Adult Day Care

• Adult day care works well for caregivers who
  cant stay home all day to provide care,
  supervision and companionship. Medicaid, and
  some private insurances pay for adult day care
  services.

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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.

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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.

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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.

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Home Care

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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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How to Choose a Nursing Home

• Getting Started
• Cost
• Location
• Appropriate Level of Care
• Quality of Care
• Reputation
• Physical Plant
• Your gut feeling

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Choosing a Nursing Home

• Plan Early
• Get Help
• Talk to Others
• Visit local facilities
• Review survey data
• Ask questions

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Terrys 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

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Terrys Tips

• Contact NCC HDSA or the Center of Excellence to
  help you with educating the nursing homes
• Make your loved ones room as personal as the
  facility will allow
• Take your loved one out as often as practical

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Terrys 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

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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.

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Contacting Resources

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

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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.
• Dont terminate the call until you are clear
  about what the next step is.

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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.

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Contacting Resources

• Dont hesitate to ask for help.
• Determine which services you are eligible for.
• Ask for advice on eligibilty and funding

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Northern California HD Resources

• HDSA Center of Excellence UC Davis
• Terry Tempkin [phone]
• Rick Henry [phone]

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Northern California HD Resources

• HD Clinic at UC San Francisco
• Sarah Lin [phone] ext 52689
• NCC HDSA Chapter Helpline [phone]
• 1-888-8CUREHD