Living with Dementia in a Continuing Care Retirement Community

1. Living with Dementia in a Continuing Care Retirement Community Pilgrim Place Forum Thursday, January 12th at 11:00 am Presented by Sue Fairley and Sharon Berry

2. Pilgrim Place - January 19, 2011 Forum on Health Services Excerpts from AAHSA meeting presentation in 2010 by Westminster Place, Presbyterian Homes Evanston Il. • Aging happens, and not always in the way we expect. • Aging in place is sometimes overrated. By living at Pilgrim Place, you have options that others do not. • People adapt best when there is a good fit between their abilities and the demands of their environment.

3. “Take Aways” from Today • We are aware of the challenges in being a caregiver 24/7. • We need to partner with you to determine compassionate solutions for you and your loved one. Please don’t shut us out, we are here to help. • Maintaining the status quo and doing nothing when individuals are struggling at their current level of care, is not an option.

4. Health Services Advisory Group2012 Mandate • Top Priority in 2012 will be to investigate options for secured memory care under the RCFE license or the LTC/SNF license and the financial feasibility for each option.

5. What is Dementia ? • Dementia is a general term for a decline in mental ability severe enough to interfere with daily life. Memory loss is an example. Alzheimer's is the most common type of dementia. • Dementia is not a specific disease. It's an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person's ability to perform everyday activities. Alzheimer's disease accounts for 60 to 80 percent of cases. Vascular dementia, which occurs after a stroke, is the second most common dementia type. But there are many other conditions that can cause symptoms of dementia, including some that are reversible, such as thyroid problems and vitamin deficiencies. • Dementia is often incorrectly referred to as "senility" or "senile dementia," which reflects the formerly widespread but incorrect belief that serious mental decline is a normal part of aging.

6. Types of Dementia • Alzheimer’s disease • Vascular dementia • Dementia with Lewy bodies • Mixed dementia • Parkinson’s disease • Frontotemporal lobar degeneration • Creutzfeldt-Jakob disease • Normal pressure hydrocephalus • Huntington’s disease • Wernicke-Korsakoff Syndrome

7. Reversible Dementia • UTI (Urinary Tract Infections) • Anesthesia • Medication • Alcohol • Brain injury • Sleep deprivation • Dehydration • Malnutrition • Vitamin imbalance • Infections

8. 10 Early Signs of Dementia • Memory changes that disrupt daily life. • Challenges in planning or solving problems. • Difficulty completing familiar tasks at home, work or at leisure. • Confusion with time or place. • Trouble understanding visual images and spatial relationships. • New problems with words in speaking or writing. • Misplacing things and losing the ability to retrace steps. • Decreased or poor judgment. • Withdrawal from work or social activities. • Changes in mood.

9. Mild Cognitive Impairment(MCI) • Mild cognitive impairment (MCI) a condition in which a person has problems with memory, language, or another mental function severe enough to be noticeable to other people and to show up on tests, but not serious enough to interfere with daily life. • Because the problems do not interfere with daily activities, the person does not meet criteria for being diagnosed with dementia.

10. CCRC Contractual Obligationsand Legal Liability • The purpose of the Care and Residence Agreement is to provide a statement of the services that Pilgrim Place will provide to you at the Community, and the legal obligations that Pilgrim Place will be assuming. This Agreement also sets forth your obligations to Pilgrim Place, both financial and non- financial

11. Care and Residence Agreement • Administration shall determine, in consultation with the clinical staff at the Community and you, and/or your legal representative, if any, or your family member(s), and your personal physician, when a level of care change is appropriate. • If assisted living services are appropriate but space is unavailable at Pitzer Lodge, or the Health Services Center, Pilgrim Place shall assist you in arranging for your care on a fee-for-service basis, either in your home or at an alternate site off the premises of the Community until something appropriate becomes available. • The limit for you to be “bed bound” in your home is14 days by regulation. During this time we will discuss with you your condition and whether it is a chronic condition where Hospice services may be appropriate or whether it is more appropriate for your needs to be met either in Pitzer Lodge or the Health Services Center depending on the prognosis of your condition.

12. Statutory Grounds for Transfer Statutory Grounds for Transfer. Pilgrim Place may, at its discretion, transfer you if it determines that any of the following grounds exists: • You become non-ambulatory as this term is defined in Section 13131 of the California Health and Safety Code, which provides that you are unable to leave your Unit without the assistance of another person during an emergency and your Unit is not -13- 1592548.8 approved by the State Fire Marshal for use by non-ambulatory residents (that is, residents who depend on mechanical aids such as crutches, walkers or wheelchairs, and residents who are unable, or likely to be unable, to respond physically or mentally to oral instructions relating to a fire danger); • You develop a physical or mental condition that endangers your health, safety, or well-being or that of another person; • Your condition or needs require that you be transferred to an assisted living care or skilled nursing because the level of care required by you exceeds that which may be lawfully provided in your home; or • Your condition or needs require that you be transferred to a nursing facility, hospital, or other facility, and Pilgrim Place has no facilities available to provide that level of care at the Community.

13. Department of Social ServicesResidential Care for the Elderly • Licensee who accepts and retains residents with “dementia” shall be responsible for ensuring the following: • “Non ambulatory” fire clearance for rooms or apartments used to accommodate persons with dementia who are unable or unlikely to respond to oral instructions relating to fire or other dangers or to independently take appropriate action. • Our response: When a resident with dementia lives with a spouse or loved one who is the primary caregiver, we must, under the RCFE regulations guarantee, that the person is never left alone due to their inability to respond appropriately to an emergency. This is an area where staff work with the caregiver to develop an appropriate service plan to ensure the resident’s safety.

14. Department of Social ServicesResidential Care for the Elderly • Licensee who accepts and retains residents with “dementia” shall be responsible for ensuring the following: • The Emergency Disaster Plan must address the safety of residents with dementia. • Our response: When a resident with dementia lives with a spouse or loved one who is the primary caregiver, we must, under the regulation, guarantee, that the person is never left alone due to their inability to respond appropriately to an emergency. Our resident Area Captains must also be aware of the residents in their area with Dementia so that they can respond appropriately in case of a real disaster: and if by chance the caregiver gets hurt and is unable to assist the resident with dementia, the Captain is aware of the need for assistance.

15. Department of Social ServicesResidential Care for the Elderly • Licensee who accepts and retains residents with “dementia” shall be responsible for ensuring the following: • Night Supervision. • Our response: When a resident with dementia lives with a spouse or loved one who is the primary caregiver, we must, under the regulation, guarantee, that the person is secure at night, in case they would decide to exit the home. There should be some device in place that would alert the caregiver who may be sleeping: otherwise there would need to be someone awake and on duty in the home if the resident is residing there. If exiting presents a hazard to the resident, an auditory device or other staff/caregiver alert feature to monitor exiting must be used.

16. Department of Social ServicesResidential Care for the Elderly • Licensee who accepts and retains residents with “dementia” shall be responsible for ensuring the following: • Annual Assessment by staff including a Physician’s visit • Our response: When a resident with dementia lives with a spouse or loved one who is the primary caregiver, we must, under the regulation, guarantee, that the person is reassessed annually to determine if their needs have changed. The service plan that determines the care and supervision for the resident would then be updated to include alterations or changes.

17. Department of Social ServicesResidential Care for the Elderly • Licensee who accepts and retains residents with “dementia” shall be responsible for ensuring the following: • Activity Program • Our response: When a resident with dementia lives with a spouse or loved one who is the primary caregiver, we must, under the regulation, guarantee that the person has access to a program that addresses the needs and abilities of the resident, including large motor activities and perceptional and sensory stimulation. This may be done in conjunction with the caregiver and entered into the Service Plan for the resident.

18. Department of Social ServicesResidential Care for the Elderly • Licensee who accepts and retains resident s with “dementia” shall be responsible for ensuring the following: • Safety Modifications • Our response: When a resident with dementia lives with a spouse or loved one who is the primary caregiver, we must, under the regulation, guarantee, that the person does not have access to oven ranges, heaters, wood stoves, or other heating devices. • Another option: Install “kill switch” or unplug items that could be dangerous. Knives, matches, firearms, tools and other items that could constitute a danger to the resident must be inaccessible. Over-the-counter medication, nutritional supplements or vitamins, alcohol, cigarettes, and toxic substances such as certain plants, gardening supplies, cleaning supplies and disinfectants, must also be inaccessible. • What this means is that either the caregiver makes these items inaccessible or has some way to monitor/supervise their loved one with dementia.

19. Department of Social ServicesResidential Care for the Elderly • Licensee who accepts and retains residents with “dementia” shall be responsible for ensuring the following: • Safety Modifications • Our response: When a resident with dementia lives with a spouse or loved one who is the primary caregiver, we must, under the regulation, guarantee that the person shall either be supervised when outside the home, or be in an enclosed area to protect the safety of the resident. GPS or other tracking/identification items may be worn, provided the item does not violate the resident’s rights. The resident with dementia may never be left alone in a locked home, as this is considered abuse and neglect of the resident with dementia.

20. In the meantime… • Caregiver Support Group will be starting on Wednesday January 25 from 2-3pm in Napier/Brunger – led by Cathy Brown, MSW. • Memory Support Group will also be starting on Wednesday January 25th from 10-11am in Napier/Brunger – led by Cathy Brown, MSW. • Clinical Team will be meeting with residents and developing service plans in cooperation with caregivers. • HSAG will be working on feasibility of Memory Care Secured option. • Scholarships are available for residents to attend the Enrichment Group at HSC on Mondays, Wednesdays, and Fridays.

21. Additional Resources for Brain Fitness and Caregiver Support • Dakim BrainFitness Software • Memory Trainer and Memory Matrix by Lumosity.com (applications for iPhone and smart phones) • CogniFit.com • Coach Broyles’ Playbook for Alzheimer’s Caregivers – a practical tips guide (www.alzheimersplaybook.com) • www.alz.org (Alzheimer’s Association) • 24- hour Help Line: (800) 272-3900 • Safe Return Program (http://www.medicalert.org/alzheimers-safereturn)

22. Questions???