Please send comments, corrections and other information to me at SquareOneAdvocacy@gmail.com I plan to update the list from time to time.
Best wishes to all –
Linda Beck, Board Certified Patient Advocate
Square One Elder and Health Advocacy
Assessment and Diagnosis
There are many possible causes for memory loss and other dementia-like symptoms. A complete medical work-up – including a physical and neurological examination, blood and other lab work, and cognitive testing – is essential to evaluate memory loss or other “age-related” cognitive changes before diagnosis. At this time, there are limited facilities for these services in SLO County. You can find information about local neurologists and testing facilities in the Area Agency on Aging guides under “Education and Support,” below. Here are links to nearby health care programs that offer comprehensive evaluations:
Education and Support
Dementia affects the entire family, not just the patient, and triggers a cascade of medical, legal and social challenges. Today’s patients and caregivers can tap into a variety of resources locally, including:
• The Area Agency on Aging’s guides to older adult services in San Luis Obispo and Santa Barbara Counties. Nipomo residents should check both guides, although some resources may be limited to county residents. The guides are free. You can call AAA to request a copy (805) 925-9554 or find them on line:
o SLO County: https://centralcoastseniors.org/wp-content/uploads/2018-2020-SLO-Resource-Guide.pdf
o Santa Barbara County: https://centralcoastseniors.org/wp-content/uploads/SB-SRD-Website.pdf
• The Alzheimer’s Association, Central Coast Chapter https://www.alz.org/cacentralcoast (805) 547-3830 has programs like Help & Hope for recently-diagnosed patients and their caregivers as well as caregiver support groups for people at all stages of the dementia journey. All support groups and caregiver education classes currently meeting on line. The Alzheimer’s Association provides dementia caregiver education classes throughout the month and the Savvy Caregiver Workshop series quarterly. Contact the Alzheimer’s Association for more information and to pre-register.
• The Alzheimer’s Association has a 24 hour help line: (800) 272-3900. The line is staffed with master-level care consultants who provide decision-making support, crisis assistance and education. Anyone can call.
• Guided Aging’s Jenny Molinar provides fee-based, personalized assistance on dementia and dementia caregiving. www.guidedaging.com (805) 305-0279
• The Family Caregiver Alliance www.caregiver.org has practical information about many aspects of caregiving and runs on-line caregiver support groups, including groups for Spanish-speaking and young adult caregivers.
A qualified case manager who knows local resources can assess current needs and provide a “plan of care” with resources. They can also help manage changes as the disease progresses. In addition to the “fee based” care managers listed in the Senior Resource Guides, Hospice SLO provides free case management including an assessment and care plan for anyone dealing with a life-limiting illness. http://www.hospiceslo.org/services/care-management-services (805) 544-2266
Every caregiver needs a break, whether it’s to go to a medical appointment, shop, or just take a walk. Some home care agencies (listed in the Senior Resource Guides) will provide these services at hourly rates. There are several local sources that provide limited amounts of free respite services:
• The Alzheimer’s Association has respite care grants available through the Mary Oakley Foundation. Eligibility is based on income, diagnosis and require residency on the Central Coast for at least 10 years. (805) 547-3830
• Coast Caregiver Resource Center has a grant to provide medical respite through workers with health care training. (805) 451-2450
• Hospice SLO County provides companionship (non-medical care) through trained volunteers. (805) 544-2266
Medicare does not pay for long term-care for patients with dementia. People who do not have adequate resources or long term care insurance to pay for this care may want to consult Senior Legal Services, listed below, or an attorney familiar with Medi-Cal planning requirements.
Deciding to move a loved one affected by dementia into full time care is hard; finding the right place when that time comes is a challenging balance of needs, money and availability. All care facilities – including skilled nursing, memory care and residential (non-medical) care – must be licensed by the State of California. Any long term care facility that accepts residents with more than “mild cognitive impairment” – the earliest stage of dementia – must be specifically licensed to provide dementia care.
• Long Term Care Ombudsman (LTCO) Services of San Luis Obispo County maintains complete lists of licensed long term care facilities in the county. ombudsmanslo.org/resources The lists identify facilities that are “dementia compliant,” licensed to provide care for residents with dementia. Any care facility you consider should be on this list. LTCO also has checklists for helping to choose a facility, reports of recent state and federal inspections, and can provide assistance understanding long term care facility admission agreements.
• Private “placement services” can help locate open beds in local facilities. Some charge the resident or family for their assistance; others are “free,” but receive a commission from the facility for each resident they place. Find these services by searching for “long term care placement assistance slo” on line, and some advertise in the Senior Resource Guides.
• The Veterans Administration has limited dementia-related resources for retired service members. Contact the Veterans Service Office for San Luis Obispo County (805) 781-5766 for more information.
Adult Day Care
There is only one licensed adult day program in SLO County at this time, and it’s in Paso Robles. www.capslo.org There are several licensed programs in Santa Barbara County: the Wisdom Center in Santa Maria (805) 349-9810 or (805) 354-5332 www.lifestepsfoundation.org and Friendship House in Solvang (805) 688-8748 firstname.lastname@example.org
A dementia diagnosis raises many legal questions, including who will make financial and health care decisions for the patient when they are no longer able to do so. The patient may also want to document their end-of-life wishes while they are able to do so. Here are some resources for legal services and documents.
• SLO Legal Assistance Foundation provides free services for older adults through the Senior Legal Services program: (805) 543-5140.
• Advanced Healthcare Directive forms (including Durable Power of Attorney for Healthcare) are available at www.oag.ca.gov; www.aarp.org; www.canhr.org
• Health Directive for Dementia: this advance directive form gives the patient options to request different types of end-of-life care at different stages of their illness. www.dementia-directive.org
Marcy Houle and Elizabeth Eckstrom, The Gift of Caring: Saving Our Parents – and Ourselves – from the Perils of Modern Healthcare
Mark Lachs, What Your Doctor Won’t Tell You About Getting Older
Nell Lake, The Caregivers
Nancy Mace and Peter Rabins, The 36-Hour Day