Purple Ribbon Task Force Survey of People With Alzheimer's Disease or Related Dementias

Transcription

1 Survey of People With Alzheimer's Disease or Related Dementias 1. Where do you live or work? 1a. City: Longwood Melbourne Ocoee Orlando Oviedo Rockledge Winter Springs Total b. County: Brevard Orange Seminole Total Have you been diagnosed with a specific condition? (Check all that apply.) 2a. I have not been diagnosed % 2b. Alzheimer's disease % 2c. Mild Cognitive Impairment (MCI) 2 9.5% 2f. Vascular Dementia 1 4.8% 2g. Memory Loss % 2h. Dementia % 2i. Stroke 1 4.8% 2l. Other 2 9.5% Total % 2. Other (please specify) I am a Nurse who cares for Alzheimer's patients Maybe ALZ, too 3. How long have you been dealing with this problem or condition? Less than a year years years Total PSA 7 1 of

2 Survey of People With Alzheimer's Disease or Related Dementias 4. How challenging are the following issues for you? 4a. Getting helpful information on Alzheimer's disease and related dementias Don't Know Not Challenging A Little Challenging b. Access to medical care for yourself Don't Know Not Challenging Somewhat Challenging Total c. Dealing with financial, legal and insurance issues Don't Know A Little Challenging Somewhat Challenging Quite Challenging Very Challenging d. Access to support groups Don't Know Not Challenging A Little Challenging Somewhat Challenging e. Loss of ability to drive Don't Know Not Challenging Very Challenging Total f. Paying for services Don't Know Not Challenging Somewhat Challenging PSA 7 2 of

3 Survey of People With Alzheimer's Disease or Related Dementias 4g. Depression or anxiety Don't Know Not Challenging Somewhat Challenging Quite Challenging Very Challenging h. Changing relationships in the family Don't Know Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging i. Communication with family and friends Don't Know Not Challenging A Little Challenging Quite Challenging Total j. Worrying about being a burden on others Don't Know A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total k. Other Don't Know Very Challenging Total Other (please specify) Finding groups of people with similar problems to socialize with. My Mom also has dementia PSA 7 3 of

4 Survey of People With Alzheimer's Disease or Related Dementias 5. What ways of getting information about Alzheimer's disease and related dementias would be most helpful to you? (Check all that apply.) 5a. Internet or web-based information and training % 5b. In-person support groups % 5c. Community education and training % 5d. Toll-free 24-hr telephone helpline 1 6.3% 5e. One-on-one counseling % 5f. Other 1 6.3% Total % 5. Other (please specify) As the disease worsens and I am unable to do some of the ordinary things that normal people do, for example: read a book, sew, knit, play cards, drive a car, etc. Socializing has become more difficult. It would be very helpful to be able to attend a group of folks who have similar impairments along with their caregivers. 6. What are the most critical issues the state government in Florida should address in the next few years? Please rate the importance of the following possible issues that Florida might address. 6a. Research on prevention, treatment, and clinical trials A little Important Somewhat Important Very Important Total b. Clinical assessment, diagnosis, and testing A little Important Quite Important Very Important Total c. Assisting families in paying for care Not Important Somewhat Important Quite Important Very Important Total d. Protecting people with Alzheimer's disease and related dementias Not Important Quite Important Very Important Total PSA 7 4 of

5 Survey of People With Alzheimer's Disease or Related Dementias 6e. Ensuring quality of care Quite Important Very Important Total f. Education and training for caregivers A little Important Somewhat Important Quite Important Very Important Total g. Economic impact of Alzheimer's disease and related dementias on communities, workplaces, and citizens Somewhat Important Quite Important Very Important Total h. Access to affordable and appropriate dementia-specific care Not Important Somewhat Important Quite Important Very Important Total i. Having an educated and trained workforce on Alzheimer s disease and related dementias Quite Important Very Important Total j. Transportation A little Important Somewhat Important Quite Important Very Important Total PSA 7 5 of

6 Survey of People With Alzheimer's Disease or Related Dementias 6k. Employment Don't Know Not Important A little Important Somewhat Important Quite Important Very Important Total l. Tax credits for caregivers Not Important A little Important Somewhat Important Quite Important Very Important Total m. Access to non-dementia-specific services Don't Know A little Important Somewhat Important Quite Important Very Important n. Specialized care facilities Don't Know A little Important Somewhat Important Quite Important Very Important Total o. Emergency Management/Disaster Preparedness A little Important Somewhat Important Quite Important Very Important Total PSA 7 6 of

7 Survey of People With Alzheimer's Disease or Related Dementias 6p. Medical care A little Important Somewhat Important Quite Important Very Important Total q. Mental health/depression A little Important Somewhat Important Quite Important Very Important Total What is your gender? Female Male Total What is your age? Total What is your marital status? Now married Partnered Widowed Divorced Total PSA 7 7 of

8 Survey of People With Alzheimer's Disease or Related Dementias 10. Are you of Hispanic, Latino or Spanish origin? No Yes Total What is your race? (Check all that apply.) 11a. White % 11b. Black or African American % 11d. Asian % Total % 12. Estimated household income Under $25, $25,000 - $35, $36,000 - $45, $46,000 - $55, $66,000 - $75, $76,000 - $85, $86,000 and over Total Any other comments or suggestions? People at home should try to learn how to cope with the problem as a family unit as much as possible by reading, studying, planning for their future without so much government intervention. People need to try to work things out to their own satisfaction. PSA 7 8 of

9 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 1. Where do you live or work? 1a. City: Apopka Barefoot Bay Cape Canaveral Casselberry Cocoa Cocoa Beach Geneva Indian Harbour Beach Kissimmee Lake Mary Longwood Malabar Melbourne Melbourne Beach Merritt Island Ocoee Orlando Oviedo Palm Bay Rockledge Sebastian Titusville Viera Village of Palm Shores West Melbourne Winter Park Winter Springs Total b. County: Brevard Orange Osceola Seminole Total PSA 7 9 of

10 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 2. How many years have you been caregiving for the person with Alzheimer's disease or related dementia? 1-3 years years years Over 12 years Total Are you the primary caregiver? Yes No Total Do you consider yourself a long distance caregiver? Yes No Total Are you part of the "sandwich generation," caring for younger loved ones such as children, and elder parents or other elder family members? Yes No Total Have you taken care of more than one person with Alzheimer's disease or related dementia? Yes No Total PSA 7 10 of

11 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 7. What is your relationship to the person you are caring for? Spouse Adult child Significant partner Sibling Grandchild Other (please specify below) Total Daughter-in-law Father Mother Parent Parents Uncle 7. Other (please specify) 8. What is the gender of the person you are caring for? Female Male Total What is the age of the person you are caring for? or older Total PSA 7 11 of

12 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 10. Where does the person you are caring for live? Alone in their own home In their own home, with others In your home Assisted living facility Nursing home Other (please specify below) Total Other (please specify) A mother-in-law home on our property. Actually OUR home I live with her I live with him in his house. In a rental with daughter In OUR HOME (I am loved one's spouse) My home and then nursing home Now deceased Sister's Home 11. What is the diagnosis of the person you are caring for? 11a. Not diagnosed 1.8% 11b. Alzheimer's disease % 11c. Mild Cognitive Impairment (MCI) 2 1.6% 11d. Frontotemporal Dementia 2 1.6% 11e. Lewy Body Dementia 3 2.4% 11f. Vascular Dementia % 11g. Memory Loss % 11h. Dementia % 11i. Stroke 6 4.8% 11j. Parkinson's disease 3 2.4% Total % 11. Other (please specify) Advanced Dementia/Alzheimer's Cerebral Amaloid Angiopathy Lewy Body Dementia MELAS muscular dystrophy/encephalomyopathy/strokes Other diagnoses for other health issues P.S.P. [Progressive supranuclear palsy] TIAs Diabetes We don't know if it's truly Alzheimer's or not...not YET. PSA 7 12 of

13 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 12. Who diagnosed the person you are caring for? Family doctor/primary care physician Neurologist Geriatrician (Florida) Memory Disorder Clinic Don't know Other (please specify below) Total Both Neurologist and Geriatrician Cancer and other health issues Compass research Doctor at Aging Institute, Melbourne, Florida VA Hospital 12. Other (please specify) 13. How much help does the person you care for need in the following areas? 13a. Taking care of himself/herself, such as eating, dressing, or bathing No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total b. Taking care of his/her residence or personal living spaces, such as cleaning, managing money, or preparing meals No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total PSA 7 13 of

14 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 13c. Communicating with others No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total d. Seeing or hearing No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total e. Moving around within the house No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total f. Transportation outside of the home No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total g. Getting along with people No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total PSA 7 14 of

15 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 13h. Relieving/decreasing anxiety or depression No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total Other No Help Quite a Bit of Help A Lot of Help Total Other (please specify) 24/7 total care. Advocating for them, coordination of all medical care, etc. and more. Activities of daily living; phone calls; TV remote. Bowel movements. Cannot be left alone because of unpredictable behavior. Couldn't function on her own. Eating, drinking, bathing, wheel chair bound, dressing, no control of bowels or bladder. Entertainment and operation of the TV or Cellular Phone. Facing needs and giving up projects too difficult. Finances, relationship with other children, socialization Finding bathroom, getting up from chair, putting shoes on correct feet, etc. Following directions, knowing directions Going to the bathroom He sees people that aren't there and he can not remember who we are at times. Helping my father cope with her disabilities Making decisions Medications Non ambulatory also has MS Providing security Routine tasks like turning on lights, fans, appliances, etc. She has dementia and is blind. Needs are many. Taking medications Totally bedridden for about one year PSA 7 15 of

16 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 14. Average number of hours per week providing care Total Do you have others helping you with the care of this person? Yes No Total PSA 7 16 of

17 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 16. If yes, who helps you with your caregiving responsibilities? 16a. Spouse % 16b. Adult child % 16c. Sibling % 16d. In-laws 2 2.0% 16e. Friend 7 7.1% 16f. Relative (aunt/uncle/cousin) 2 2.0% 16g. Paid help % 16. Other % Total % Adult center (10), agency (5 hrs.) Child (teenager) Grandmother Home health aide bathes and dresses him - 1 hour 5 days a week, and I take him to Joe's Club for about 6 hours 5 days a week Hospice Hospice aide and one day weekly of adult day care Joe's Club adult day care My father My mother My teenage children None Nursing Home Staff Share the Care helped in the past, hospice helps now that person is terminal Share the Care, Hospice Volunteer 16. Other (please specify) 17. Who provides routine assistance when the primary caregiver is absent? A paid nurse but only a few hours a week. As a caregiver I can never really be absent 1 1.4% Adult child 1 1.4% Adult child or paid help 1 1.4% Adult children - rarely 1 1.4% Adult daycare 2 2.7% ALF and friend 1 1.4% Another caregiver or myself 1 1.4% Assisted living staff 1 1.4% Caregiver 1 1.4% Caregiver is never absent for more than an hour 1 1.4% CNA 2 2.7% Daughter and sister 1 1.4% Four nights annually of respite care so I can travel a little 1 1.4% PSA 7 17 of

18 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias Friends 1 1.4% Grandchildren 1 1.4% Grandmother 1 1.4% Home health service 1 1.4% Hospice 2 2.7% Hospice, friend, sisters come down to FL 1 1.4% House keeper 1 1.4% I am never absent - with him 24/ % I can't be absent! 1 1.4% I'm the caregiver 24/ % In-law 1 1.4% Me 1 1.4% My adult child 1 1.4% My brother 1 1.4% My brother or infrequently, a paid sitter 1 1.4% My daughter or sister 1 1.4% My husband 1 1.4% My son (lives out of state), nephew (occasionally), no routine assistance % My son and I 1 1.4% Myself 2 2.7% N/A 1 1.4% Never absent 1 1.4% Never happens 1 1.4% No one 2 2.7% No one - I can not go away % No one, I'm never absent so far % No one, we are always together % No other help 1 1.4% Nursing home staff 3 4.1% Other children or grandchildren 1 1.4% Other sister 1 1.4% Paid caregiver 30 hours a week while I work 1 1.4% Paid help 6 8.1% Respite 2 2.7% Sibling 1 1.4% Sibling or in-law 1 1.4% Sister 3 4.1% Son 2 2.7% Son, paid help 1 1.4% Spouse 2 2.7% Very rarely occurrence, daughter does 1 1.4% Visiting Angels or me 1 1.4% We share 1 1.4% Wife (me) 1 1.4% Total % PSA 7 18 of

19 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 18. How challenging the following issues affecting the person with Alzheimer's disease or related dementia have been for you and your family. 18a. Loss of ability to drive Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total b. Depression or anxiety of the person with Alzheimer's disease or related dementia Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total c. Difficult behaviors Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total d. Wandering or safety Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total PSA 7 19 of

20 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 18e. Becoming a financial burden Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total f. Losing control over lifestyle Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total Other (please specify) Ability to earn a living Aggression, anger, refusal to take medication Emotional toll of doing the bulk of it alone, lack of sleep, difficulty finding time to take care of my own needs such as paying bills, doctor visits, etc. Finding relief for me as a caregiver so I don't burnout, finding reliable help, finding assistive communication tools and cognitive therapy tools, games, etc. to help patient stay as active mentally as able, especially as he declines. Has never driven, has depression, difficult behavior symptoms. I am so overburdened caring for all things he used to do. I have almost no time to get rest, socialize. Incontinence Mental status My health is affected My mom dealing with her changes in medication. She is aware but there is little she can do. My mom wants to live in her own home with the help she needs. Not able to take care of bodily functions Occasional hallucinations, finding socialization, getting out into community, having to become the parent to my own mother, sometimes her not knowing who I am, never getting a real break from the daily needs and routine, loss of free time for myself Peace of Mind Sleepless nights and always monitoring behavior. Spouse's inability to care for self Toileting, transferring. Until I received help from VA and Your Care Brevard, finances were BIG problem. PSA 7 20 of

21 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 19. How challenging are (or have been) the following issues to you as a caregiver? 19a. Getting helpful information on Alzheimer's disease and related dementias Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total b. Getting information about community resources Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total c. Access to medical care for yourself Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total d. Access to medical care for your family member with Alzheimer's disease or related dementia Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total PSA 7 21 of

22 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 19e. Dealing with financial, legal, and insurance issues Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total f. Access to support groups Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total g. Access to respite care, adult day care, and other services Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total h. Paying for services Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total i. Changing relationships in the family Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total PSA 7 22 of

23 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 19j. Communication with the person with Alzheimer's disease or related dementia Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total k. Dying before the person with Alzheimer's disease or related dementia Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total l. Losing control of lifestyle Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total m. Loss of employment Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total n. Getting an appropriate diagnosis Not Challenging A Little Challenging Somewhat Challenging Quite Challenging Very Challenging Total PSA 7 23 of

24 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 19. Other (please specify) Being far away from family who live out of state and cannot help with day to day caregiving tasks. Every day in an uphill battle and loved one can still take care of hygiene, speak, eat on own, etc. Depression Finding adequately trained medical professionals, outside of the neurological community, that know how to deal with and treat someone with dementia Having the community outside of family understand the nature of the disease My husband is in an experimental drug program and the folks there say that since his diagnosis in 2008 they've come up with a new diagnosis of MCI that might fit my husband better. His neurologist is non-committal on the subject. Meanwhile, since his diagnosis, he was summarily released from his job as an arborist because of the liability of his operating the machinery or driving. And he has had to take a job within the same company for half the pay he was making. Putting life & career on hold. The toll that emotional and financial stress take Until I found out where and how to apply for help 6, 7, and 8 [19 f-h] were very difficult Very concerned about over medicating when there are natural alternatives with less side effects 20. Difficulties you may have faced as a caregiver. 20a. Creates a financial burden Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total b. Doesn't leave enough time for yourself Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total c. Doesn't leave enough time for your family Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total PSA 7 24 of

25 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 20d. Interferes with your work Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total e. Creates anxiety or depression Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total f. Feeling resentful Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total g. Creates or aggravates health problems Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total h. Affects family relationships Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total PSA 7 25 of

26 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 20i. Interferes with employment/loss of employment Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total j. Difficult behaviors Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total k. Wandering or safety Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total l. Understanding the disease Strongly Agree Agree Neither Agree or Disagree Disagree Strongly Disagree Total PSA 7 26 of

27 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 20. Other (please specify) Being afraid that if something happened to me, who could step in and help my husband? Doctors aren't as helpful as support groups are Guilt about placement outside of the home I found the hardest part to understand is the progression of the disease. No one really understands or knows why or how the disease develops. There must be more that can be found out and taught to care givers so we can have more understanding and perhaps make our lives easier to manage INTERFERS WITH SOCIAL AND PERSONAL LIFE My strength/health suffering greatly but he won't consider assisted living Putting life on hold Spouse developing depression The overwhelming effect on me as the only one to be there for my mom Trusting health professionals with drug monitoring 21. What type of support do you need to keep the person you care for at home? (Check all that apply.) 21a. Financial assistance % 21b. Transportation % 21c. Education and training for caregivers % 21d. Legal advice % 21e. Medical care % 21f. Respite % 21g. Meals % 21h. Personal care % 21. Other 6 2.4% Total % 21. Other (please specify) Blind services Friends who can come and stay with mother so I can have some time to self Hospice Husband deceased I don't have a life Keep occupied and busy throughout the day My own health and ability to remain adequate No longer at home None Personal time Spiritual grounding to handle the stress. Help that comes to us in the house since getting out of the house is hard sometimes, Understanding without pity PSA 7 27 of

28 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 22. Have you made a plan or other preparations for what to do in case there is a disaster, like a hurricane? (Check al that apply.) 22a. No, I do not have a plan or other preparations % 22b. Yes, I have a written plan % 22c. Yes, I have a survival kit % 22d. Yes, I have registered with my county for a Special Needs Shelter % 22. Other % Total % Assisted living facility has a plan (4) 22. Other (please specify) Daughter will provide care Family help Hospice organization provides transportation to a special needs shelter I have a plan but due to my husband's continued decline, it becomes less and less trustworthy to put into place if there was a disaster. I also got a generator for backup power since he needs medical equipment now, but I have no one to show me how to use it or help me if I needed it. I have a plan. If able to we will go to a motel as we have done in the past I'll go with my children someplace. Live within 1/4 mile, would bring them to my home. Mom stays with son during hurricane season. Nursing home has made those plans for her and the rest of the facility Package foods, sterno stove, water, extra medications She is in hospice, and we have discussed procedure in the event of a disaster or hurricane.. Will travel by car to a safer family member's home if there is enough warning, such as hurricane. Have a safe room in the house for severe storms. 23. What ways of getting information about Alzheimer's disease and related dementias and caregiving would be most helpful to you? (Check all that apply.) 23a. Internet or web-based information and training % 23b. In-person support groups % 23c. Community education and training % 23d. Toll-free 24-hr telephone helpline % 23e. Case management % 23f. Seminars % 23g. One-on-one counseling % 23h. Employers 7 2.6% 23. Other 5 1.9% Total % PSA 7 28 of

29 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 23. Other (please specify) Doctors, nurses, media about the disease and where to get help. Doctor's Office I have a computer but do not know how to use it. Local Alz Association Nursing facility possibly hold informational meetings at various times for those who work unusual hours Support group South Orlando after 6pm... any available as I know. I'm a adult child working full time and it's very challenging. Support groups that are available in or close to my zip code. Caregivers (when they do get a break) often need to stay near home when out and about. Maybe even support groups online like a webinar for those tech savvy. Support from friends via , Facebook, Internet, etc. is crucial to keeping a feeling of connectedness at home when a caregiver feels trapped. 24. What services have you accessed to care for the person with Alzheimer's disease or related dementia? (Check all that apply.) 24a. Home health % 24b. Personal care/bath assistance % 24c. Homemaker/Housekeeper % 24d. Counseling % 24e. Case management % 24f. Adult day services % 24g. Respite % 24h. Hospice % 24i. Aging and Disability Resource Center % 24j. Area Agency on Aging % 24k. Education % 24l. Research/Clinical trials 9 2.5% 24m. Support Groups % 24n. Telephone reassurance 8 2.3% 24o.Personal emergency response systems % 24p. Wanderguards/Project Lifesaver 7 2.0% 24q. Meals on Wheels 4 1.1% 24r. On-line support through professional or informal groups (for example, Facebook) 9 2.5% 24s. On-line research/support/blogging % 24t. Legal services % 24u. Memory Disorder Clinic % 24. Other 5 1.4% Total % 24. Other (please specify) Alzheimer's Association Alzheimer's Resource Center, Alzheimer's Association, Hospice in home management Captel caption phone for impaired patient (includes button to call for emergency help), disabilities expo for communication/cognitive resources, speech therapy, occupational therapy Consultation with out of town family members for respite care. I did these things several years ago except for home care. That just caused both of us too much stress. Nursing home PSA 7 29 of

30 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 25. How were the services paid for? (Check all that apply.) 25a. Private pay/out of pocket of person % 25b. Trust funds 6 5.1% 25c. Family supported 7 5.9% 25d. Long-term care insurance 7 5.9% 25e. Medicaid % 25f. Nursing Home Diversion Medicaid Waiver 6 5.1% 25h. Government funding 8 6.8% 25i. County/City funding 5 4.2% 25j. Veterans Administration 6 5.1% 25. Other % Total % 25. Other (please specify) Drug companies and Alzheimer's organization Free Hospice paid for by Medicare I paid all costs above Medicare and insurance Insurance Internet Medicare Medicare/insurance Medicare advantage plan and hospice grant Medicare bath aide sent for 5 visits and then ended which made it harder on me to keep my mom. Pocket 26. What prevents you from receiving the services or resources you need but don't have? (Check all that apply.) 26a. I don't know where to find them % 26b. I can't afford them % 26c. I don't have transportation to use the service 1 1.1% 26d. I don't have time % 26e. They are not available % 26f. Family dynamics - I'm a long distance caregiver 4 4.3% 26. Other 8 8.7% Total % PSA 7 30 of

31 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 26. Other (please specify) I don't need at this time I'm not at that point where I need those other services yet. Loved one does not want us to use them. No good long-distance family support from sisters far away. No problems Only recently have started to need the help and am seeking info Throughout the past 10 years my husband has required varying degrees of help as his condition has worsened. It has not been until last 5 years I have found a little help. Turned down due to income - too high!!!! Unaware of need Very time consuming to apply; long waiting lists 27. The Purple Ribbon Task Force wants to increase general awareness and understanding of Alzheimer's disease across Florida. Which of the following would be the best ways to raise public awareness of Alzheimer's disease and related dementias in your community? (Check all that apply.) 27a. Employers % 27b. Hospitals % 27c. Aging services and senior centers % 27d. Churches and faith communities % 27e. Veterans Administration % 27f. Public service announcements on radio and TV % 27g. Medical training schools % 27h. Law enforcement % 27i. Physicians % 27j. Nursing schools % 27k. Religious organizations % 27l. Website with updated information % 27. Other 8 1.5% Total % 27. Other (please specify) Being able to Google specific info and finding help. Community awareness events held at public places like schools, libraries, etc. Maybe once a month. Comprehensive training of first responders, training medical staff to understand and care for whole person. One doctor told me my mother did not need rehab after breaking collar bone because she had dementia! Challenged that and therapy was provided and family and friends help assist and support PT therapy until Mom regained full use of shoulder! I know many of these services are already doing a good job, but do think many of our churches don't know how, or are unwilling, to help with adult care, prepared meals, respite help Newspaper & TV segments No medical schools or nursing schools near me yet. WHY? No VA center near me yet. Press releases to newspapers on news/research/data about Alzheimer's. Finding families willing to talk with news media about the effects of the disease on families. Schools as early as Elementary to understand what is happening to a parent, grandparent, friend or neighbor. PSA 7 31 of

32 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 28. What are the most critical issues that the state government in Florida should address in the next few years? Please rate the importance of the following possible issues that Florida might address. 28a. Research on prevention, treatment, and clinical trials Don't Know Not Important A Little Important Somewhat Important Quite Important Very Important Total b. Clinical assessment, diagnosis, and testing Don't Know Not Important A Little Important Somewhat Important Quite Important Very Important Total c. Assisting families in paying for care Don't Know A Little Important Somewhat Important Quite Important Very Important Total d. Protecting people with Alzheimer's disease and related dementias Don't Know A Little Important Somewhat Important Quite Important Very Important Total PSA 7 32 of

33 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 28e. Ensuring quality of care Don't Know A Little Important Somewhat Important Quite Important Very Important Total f. Education and training for caregivers Don't Know Somewhat Important Quite Important Very Important Total g. Economic impact of Alzheimer's disease and related dementias on communities, workplaces, and citizens Don't Know Somewhat Important Quite Important Very Important Total h. Access to affordable and appropriate dementia-specific care Don't Know Somewhat Important Quite Important Very Important Total i. Having an educated and trained workforce on Alzheimer s disease and related dementias Don't Know Somewhat Important Quite Important Very Important Total PSA 7 33 of

34 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 28j. Transportation Don't Know A Little Important Somewhat Important Quite Important Very Important Total k. Employment Don't Know Not Important A Little Important Somewhat Important Quite Important Very Important Total l. Tax credits for caregivers Don't Know Not Important Somewhat Important Quite Important Very Important Total m. Access to non-dementia-specific services Don't Know Not Important A Little Important Somewhat Important Quite Important Very Important Total n. Specialized care facilities Don't Know Somewhat Important Quite Important Very Important Total PSA 7 34 of

35 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 28o. Emergency Management/Disaster Preparedness Don't Know A Little Important Somewhat Important Quite Important Very Important Total p. Medical care Don't Know Somewhat Important Quite Important Very Important Total q. Mental health/depression Don't Know Somewhat Important Quite Important Very Important Total Other Don't Know Not Important Very Important Total Other (please specify) Affordable legal help for the mountains of paper work Hearing impaired and the impact upon one's medication Intergenerational experiences: get school kids involved More resources for dementia and blind (personal companionship, phone counseling) Prepare hospitals to handle dementia patients Services available in South Orlando PSA 7 35 of

36 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 29. What is your gender? Female Male Total What is your age? Total PSA 7 36 of

37 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 31. What is your marital status? Now married Partnered Widowed Divorced Separated Never married Total Are you of Hispanic, Latino or Spanish origin? No Yes Total What is your race? (Check all that apply.) 33a. White % 33b. Black or African American 4 5.7% Total % 34. Do you speak a language other than English in your work or home life? Just English Spanish Total What is your highest level of education attained? Grade School High School College Post College Total PSA 7 37 of

38 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 36. Are you employed? Full-time Part-time Retired Unemployed Other (please specify below) Total Other (please specify) Loved one is retired military; I worked on and off through the years. Self-employed Semi-retired on tiny pension Work on a contract basis at home 37. Do your caregiver responsibilities affect your employment? Yes No Total If yes, did you have to cut back on your hours of work? Yes No Other (please specify below) Total Absence to take care of her Flex hours 38. Other (please specify) Gave up my work to care for my husband Had to exhaust my sick leave. I did somewhat when patient was living in my home. I had to leave my place of work to care for my Dad. I retired early to take care of her I work full time at home, and I have to ask for time off because of mom, or step away if she needs my attention. Potentially puts my job at risk Just have to work more hours to catch up Just work more hours to cover needed time off Put career on hold & take another position with flexibility & much lower pay with no benefits. Retired Was laid-off PSA 7 38 of

39 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias 39. If yes, did you leave your job? Yes No Other (please specify below) Total Other (please specify) Family Leave for 2-3 months twice in past 3 years I had to go back full time or lose my job I retired early to take care of her Lost my job Retired sooner than I would have liked Was laid-off 40. Estimated household income Under $25, $25,000 - $35, $36,000 - $45, $46,000 - $55, $56,000 - $65, $66,000 - $75, $76,000 - $85, $86,000 and over Total Any other comments or suggestions? 1. Need to train ALL medical personnel on how to deal with and treat people with dementia and require continuous education to maintain their medical credentials. 2. Need to eliminate "moratorium" on building more nursing homes and provide more progressive care facilities. 3. Need to educate the general public to remove the "stigma" associated with people who have dementia and related diseases. 4. Need to provide easier access for caregivers to get guidance and help in dealing with someone who has dementia/alzheimer's. 5. Need to provide more affordable ways to provide caregivers needed respite. 6. Need to disseminate this survey more widely and extend time to respond. Dementia and Blindness is a difficult combination. My Mom's anxiety/confusion is mainly from not understanding, knowing, or seeing her surroundings. Nothing is familiar. It's as if someone blindfolded you and brought you to my home with strangers in and out saying you will be okay. Figure out your food, bathroom, bed, no knowledge of date/time, where to safely walk, when in an area how to leave or join in. Blindness is difficult without a daily companion (one person) that's there for you. I am 3 horrs away. The more interactions with different people the more unsure, anxiety, confusion, frustration develops. I know she would improve daily if she had a daily personal companion to assist her due to her blindness (she likes bingo, puzzles, reading, writing, trivia, and now these things are slipping away) Drug trials for cures need to be funded more to allow more individuals and those with moderate to severe dementia to participate. My husband is just 63, was diagnosed 6 years ago and never has been able to get into a trial. Financial help for long term care facility housing PSA 7 39 of

40 Survey of Family Caregivers of People With Alzheimer s Disease and Related Dementias Good to know somebody is asking the questions I appreciate all that your organization does. I do appreciate all the good work Elder Affairs does and have gotten much information from their web site. I also have been given assistance and information from other organizations and agencies. We attended the Brain Bank and I attended a few support groups early on. Then, I realized how disorganized all our financial affairs were, and I've been using all my energy and time to correct and handle same. My son who lives over 1000 miles away has come down and helped me set up online accounts. (I'm still working on these after two months. It's very difficult to go tech when you've only ed.) Thank you for working so hard for those of us in this situation. I think caregivers need to be educated more on the specifics of Alzheimer's and why the people suffering from it do the things they do. I think with the proper education on the disease, perhaps the caregiver can have more patience creating a less hostile environment for the person suffering from the disease. I feel like I am constantly running interference between my mother, the primary caregiver, and my father, the one with the Alzheimer's. I think many people put off medical care for themselves in order to provide care for spouse who is under 65 but has dementia. Medicare should be available to people with dementia who are under 65. I took care of my first wife for 12 years, who died from Alzheimer's disease over six years ago, and now my second wife has been diagnosed with early onset Alzheimer's. She is in a drug trial now. Respite care and some day care will be useful in the future? I know I will need some help from a support group in the future. In the 5 years I've been taking care of my mom, I've spent my life savings, sold my assets, dropped my health insurance and took an per hour part time job just to have some income for gasoline and food. It's hard finding work and a workplace that will allow me to come in at 10am (after I get Mom up and fed, etc.) and leave at 2pm (to come home to make her lunch/supper, etc.) My mother passed away. I still have nightmares watching her die. She was a proud person and she would have been humiliated and horrified as to the way she ended her life. There has to be a better way! Seeing we're living longer many more people will have Alzheimer's. Move now before we're behind already So far for 7+ years I have been able to take care of my wife quite satisfactorily, at least to me. We do have insurance but haven't had to make use of it yet. So many people think Alzheimer disease is only a matter of "forgetting names" and do not realize the full extent of the disease...how the person fades away little by little till all of the bodily functions of an adult are lost. The sense of loss to the family that goes on and on with no hope of the situation getting any better or even being able to adjust to the situation "as is" because it is never the same. Sole care givers cannot leave the home to take advantage of resources. Need help there. Also, sole care givers seriously n help finding ways to rest while caring. Need more control over and rating of home support services and businesses. We found many that were dangerously under trained and incapable and uncaring but had no way to find out except to have them in the home. Very bad situation. One hospital is dangerous to and abusive of elders. Seriously needs either to be improved or shut down. Support the highest level of funding for Share the Care and other such agencies...restore the pre funding levels and then add some more!!!!!!!!!!!!!! Follow Oregon and the other more progressive states and GET A STATE INCOME TAX IN HERE! Thank you for your support and help. Thanks, for doing this. Sometimes I feel that I am drowning!!! It is good to see a lifesaver in front of me. The support group offered by Alzheimer's Association has been a very important help for my mother, primary caregiver for information, emotional support and stress management There needs to be more easily available and understandable information about Medicaid - online application is very confusing and rules are very convoluted This is an epidemic. It requires a massive commitment by government at all levels not just for the afflicted but for their famil and communities. We are behind where we should be and not moving fast enough to catch up. This was an excellent survey! I am passing it on to a lot of my friends. We will be the next patients! WE MUST LEARN MORE ABOUT THESE DISEASES AND HOW THEY AFFECT SUFFERERS. With Florida having the largest Medicare recipient population in the country, the amount of financial resources allocated in the state budget for respite care for Alzheimer's' caregivers is an insult - we need many more resources devoted to this disease. PSA 7 40 of