1. Biogen Preceptorship: Caregiving 101
May 20, 2018
Samuel J. Hickson, LSW, MSSA
Social Worker I

2. Outline Cost of caregiving Value of caregiving
Challenges prevalent in neurodegenerative disorders
Framework for de-escalation
Caregiver communication tools

3. Cost of Caregiving
16.1 million Americans >18.4 billion hours of unpaid caregiving.
$232 billion of unpaid caregiving.
62% are women
23% are 65 years of age or older
Source: Alzheimer’s Association

4. Cost of Alzheimer’s Care

5. Caregiving Roles Care provider Advocate Problem solver Confidant
Essential roles person can no longer perform
Role Influencers
-Cultural expectations -Family structure
-Religious beliefs -Geography
-Health -Wealth
Burden of care
- type of care
- 24/7 – average 7 years
- often don’t realize changes until something happens
Burden of dependency
Lost dreams, expectations
Loss of social network – isolation, stigma of disease, others do not understand their experience
Family structure and dynamics

6. Challenges for Caregiving
Relationships
Burden of care
Financial stress
Support network
Safety
Health
Loss of Identity
Relationships
- change due to diagnosis, over illness
Burden of care
- type of care
- 24/7 – average 7 years
- often don’t realize changes until something happens
Burden of dependency
Lost dreams, expectations
Loss of social network – isolation, stigma of disease, others do not understand their experience

7. Unique Challenges

8. Behaviors Behaviors Sundowning Communications
Activities of Daily Living

9. Legal and/or Financial Matters
Living Trust, Estate issues, Wills and Advanced directives (POAs)
Disability: SSDI/SSI
Conservatorship/Guardianship
Long Term Care
One of the first things that we often find as a resource request is finding assistance to handle legal affairs. This may have a different approach depending on whether you are non-symptomatic or an individual living with condition. This is primarily due to questions that may arise to regarding a person’s capacity to make these decisions. As a result, before legal documents can be drafted, an individual living with the condition may be asked to get a note from their provider (i.e. primary care phyisician or neurologist) that they are able to create documents.
There are many attorneys that can assist with the development of these documents. I often advise the conversation be had with an attorney before developing the documents so that informed decisions can be made.
Disability -- the best way we can assist with disability is for the team to detail at each medical assessment the challenges and difficulties the patient is having both at work and at home. Detailing changes in:
physical function (fall risk, balance issues, difficulty sitting/standing for prolonged time),
Cognitive function – decline in assessment scores like the MMSE or MOCA, can include anecdotal information from pt and family about the cognitive changes they have witnessed as well (trouble focusing, short term memory loss, difficulty organizing, trouble learning new skills, etc)
Mood and Behavior – must include in notes how mood and behavior is causing challenges in relationships, ability to regulate mood, etc.
Detailed notes from all providers is the best way for HD teams to help patients with disability claims. Its not enough to tell Social Security “they can’t work due to HD”, we need to describe their decline and difficulties in daily and employment functioning.
Families may inquire about Conservatorship/Guardianship of their HD loved one, this is a legal process and can take 6 or more months, but in some cases is necessary.
Long Term Care – patients and families often need resources and information about how to finance long term care. Many times family assume Medicare will cover nursing home, in home care, etc however this is NOT the case. Therefore families should be encouraged to consider Long Term Care insurance if eligible. If they are not, due to HD or other diagnosis, families should consider consulting a Financial Planner or Senior/Elder Law Attorney to see what other options may be available.

10. Workplace Accommodations
Assistive devices
Workplace accommodations
In collaboration with federal laws, we can help individuals apply for workplace accommodations. The point of workplace accommodations is that individuals living with Huntington’s disease and those without symptoms but may be gene positive should be allowed to be a contributing member of society and not be relocated to being seen as “just their condition.”
We can often write letters detailing effective accommodation strategies based on the medical assessment of the HD/JHD person to help them advocate for their needs in the workplace or school.

11. Rehabilitation Services
Physical Therapy
Occupational Therapy
Speech Therapy
Skilled Nursing Care
At stages of the condition where we might find need for rehabilitative interventions, we often connect individuals with rehabilitative services. As mentioned previously, resource connection when living with HD is really about meeting the individual where they are. Sometimes it can be difficult to come to rehabilitation centers or to the clinic and as such, sometimes we must utilize home-based rehabilitation services that are often covered through an individual’s insurance.

12. Medical Equipment Equipment for home Equipment for work
Often medical equipment can play an important role in maintaining independence and if your team has a Physical Therapist on the team they can help assess and identify equipment that will best meet the patients needs. Some medical equipment can be obtained through insurances although it does require specific language and documentation from the prescribing professional that details specific need. Equipment can also be purchased private pay if the family has the financial means.

13. Home Modifications Medical architecture firms
Financial assistance for home modifications
As with workplace accommodations, home modifications are often a necessary exploration for persons living with Huntington’s disease. This can be for a variety of reasons ranging from safety concerns to just being as independent as possible for as long as possible. Within the community there are architecture firms that can provide consultations as well as organizations that can help with financing the modifications. For HD, often times families reconfigure the bathroom to allow more space for wheelchair and safe toileting and showering needs.

14. Respite Resources Assist with activities of daily living only
Respite Programs
Senior Centers
In Home Assistance
Out of Home Respite
Adult Day Healthcare Centers
One of the areas that research has found can REDUCE caregiver stress is respite resources that may help prolong ones ability to remain in the home longer and prolong the caregivers health/well being to provide long term care.
Respite programs allow family time away from caregiving responsibilities. Some options for these are:
In CA, California Caregiver Resource Centers, non-profit organizations that pay a certain number of respite hours for eligible families.
Senior Centers – activities and programs targeted to meet the interests and needs of the seniors/disabled in the community. Has social activities, meal programs, and some have support groups and travel opportunities as well.
Adult Day Health Care – patient can go to the facility during the day usually about 8 hours. Most facilities offer social activities, provide meals and snacks. Some may also offer nursing, physical therapy, social services, massage therapy, and dietician support. This is covered by Long term Care Insurance policies or private pay. Medicaid/Medi-Cal may also cover in some circumstances.
In Home Care Assistance – Paid by Long Term Care insurance, private pay or through Medicaid/Medi-Cal eligible patients. Some veterans may be eligible for paid caregiver assistance based on their military service.
Out of Home: Some assisted living facilities and skilled nursing facilities offer 24 hour respite care in their facilities so care partners can travel as needed for work or pleasure. This service is NOT paid by any insurance and would be paid out of pocket.

15. Early Intervention
Collaborations with medical professionals to simplify administration of medication reduces caregiver stress (Kamimura, Ishiwata, & Inoue, 2012).
Individual Counseling and Group Counseling (Gaugler et al., 2008).
Psychoeducation Groups reduced feelings of isolation (Senanarong et al., 2004).
Caregivers aged have a 63% higher mortality rate compared to noncaregivers (Schulz & Beach, 1999; Christakis & Allison, 2006).

16. Contact Information
Samuel J. Hickson, LSW, MSSA. Social Worker I Tel: