Dementia Friendly Southern Nevada 5/5/2017 Dementia Friendly Southern Nevada Caregiver Focus Group

Caregiver Focus Group Date: Wednesday, April 12, 1:15PM-2:45PM 5/5/2017 Caregiver Focus Group Date: Wednesday, April 12, 1:15PM-2:45PM Location: Cleveland Clinic, KMA Event Center Facilitator: Dr. Donna Munic-Miller Cleveland Clinic Psychologist Memory Loss Support Group facilitator Note Taker: Kristopher Kaplan UNLV MPH Intern Participants: 12 participants from Dr. Munic-Miller’s support group and 8 facilitator observers

Methods: 6 Questions, Facilitator, & Note taker Goal: Objective: 5/5/2017 Methods: 6 Questions, Facilitator, & Note taker Goal: To publish a brochure/pamphlet that will help ease the burden for new and established caregivers. Objective: To educate our community about dementia. To inform individuals affected by dementia about available community resources.

5/5/2017 Analysis: 1. What do you wish you had know when your loved one was showing symptoms of dementia? Quotes: “What doctor do I even go to for a diagnosis?” (9) “Took him 3 years… it wasn’t until he got a PET scan that it was diagnosed. Every doctor prior to that said he was healthy. Emergency room physicians didn’t have any input.” (8) “Public Services and things as simple as a handout or flier would have provide general knowledge. (4) That there is no cure. What doctor to go to for a diagnosis? The difference between dementia and Alzheimer’s disease. Caregivers advocated for public service announcements, information guides, handouts, pamphlets, and fliers.

Analysis: 2. What dementia-care services have you received? Quotes: 5/5/2017 Analysis: 2. What dementia-care services have you received? Quotes: “There are limited resources in rural areas with people that are not fully prepared/qualified to look after an individual with Alzheimer’s.” (7) “Adult day care is good, but it’s not free and an can only be paid through insurance sometimes.” (9) Continuous care facility; Coursera; REACH program; Cleveland Clinic; Adult Day Care.

5/5/2017 Analysis: 3. Are you satisfied with the resources available for patients/caregivers? Quotes: “Due to a grant, I was able to receive in home help for a few hours. When [loved one] had a stroke, a nurse told me about a type of service for home care. Little things/tasks meant the world to my partner and I wasn’t able to understand.” (10) “The RAMP program took forever to get to me and I ended up doing it myself. It took me a year.” (14) Caregivers are appreciative of home care. Disappointed with doctors not being able to communicate effectively, “What’s going on.” Delays in installing ramp via RAMP program.

5/5/2017 Analysis: 4. What limitations do you face in terms of receiving support services for yourself? Quotes: “It’s difficult to get hospital workers to listen to us or believe us about our loved one’s health. (8) “It should be almost mandatory that public and private facilities provide information about services for everybody or make them public.” (6) “My doctor was able to guide me through the correct steps, but there was not enough information about the medications.” (5) Some information guides do not cover the entire spectrum of the disease. Some caregivers believe PCPs are not providing an early diagnosis. Police, fire department, emergency room should be required to receive training to detect symptoms of dementia. Belief there is not enough education about dementia medication, or direction from the doctor.

5/5/2017 Analysis: 5. What is the one thing you believe everybody in the community should understand about dementia? Quotes: “The community shouldn’t be so quick to judge the caregiver or the person during an episode. Advocates need to make the public aware that this disease can affect everybody, at every age, at any time. AIDs affected a younger generation, while Alzheimer’s affects an older population. Younger people still have their whole lives ahead of themselves.” (6) “The majority of people were aware that something was going on with my wife. The issue of Alzheimer’s is that its prevalence and incidence is only going to get worse.” (7) Continued… Dementia awareness & advocacy. To eliminate the stigma of dementia and expel deter judgment.

Analysis: Continued... Quotes: 5/5/2017 Analysis: Continued... Quotes: “People think it’s going to happen later so they aren’t worried about it until it’s too late. The stigma of this disease, is that it only affect the elderly, creates this situation.” (16) “Dementia is affecting younger people now. It isn’t just a disease that affects a specific population.” (19)

5/5/2017 Analysis: 6. How do you like to receive information on Alzheimer’s and/or dementia? Quotes: “Provide a local phone number because not everybody is technologically capable.” (1) “Information about support groups, what’s available to help the caregiver. Information about the financial implications from dealing with this disease; such as financial assistance or free programs.” (2) Contents: phone number, website, support groups, financial assistance, free programs, Medicare coverage. Target audience: PCP, medical staff, patients & caregivers, schools.

5/5/2017 Conclusions: ?