Purple Ribbon Task Force

Purple Ribbon Task Force

Survey of People With Alzheimer's Disease or Related Dementias

Surveys With Fewer Than 3 Respondents Were Not Analyzed

PSA 5

1 of 57

2013

Purple Ribbon Task Force

Survey of Family Caregivers of People With Alzheimer's Disease and Related Dementias.

1. Where do you live or work?

1a. City:

Responses

Clearwater Dade City Gulfport Holiday Land O' Lakes Largo Lutz Palm Harbor Safety Harbor Seminole St. Petersburg Trinity Wesley Chapel Total

1b. County:

Responses

Pasco Pinellas Total

Number

6 1 1 1 1 8 2 3 2 2 6 1 1 35

Percent

17.1 2.9 2.9 2.9 2.9

22.9 5.7 8.6 5.7 5.7

17.1 2.9 2.9

100.0

Number

8 29 37

Percent

21.6 78.4 100.0

2. How many years have you been caregiving for the person with Alzheimer's disease or related dementia?

Responses

Newly diagnosed 1-3 years 4-7 years 8-11 years Over 12 years Total

Number

1 9 14 9 4 37

Percent

2.7 24.3 37.8 24.3 10.8 100.0

3. Are you the primary caregiver?

Responses

Yes No Total

Number

28 9

37

Percent

75.7 24.3 100.0

PSA 5

2 of 57

2013

Purple Ribbon Task Force

Survey of Family Caregivers of People With Alzheimer's Disease and Related Dementias.

4. Do you consider yourself a long distance caregiver?

Responses

Yes No Total

Number

4 32 36

Percent

11.1 88.9 100.0

5. Are you part of the "sandwich generation," caring for younger loved ones such as children, and elder parents or other elder family members?

Responses

Yes No Total

Number

12 24 36

Percent

33.3 66.7 100.0

6. Have you taken care of more than one person with Alzheimer's disease or related dementia?

Responses

Yes No Total

Number

6 30 36

Percent

16.7 83.3 100.0

7. What is your relationship to the person you are caring for?

Responses

Spouse Adult child Sibling Other (please specify below) Total

Number

13 15

1 6 35

Percent

37.1 42.9

2.9 17.1 100.0

Daughter Father Mother Mother and Neighbor Mother-in-law Son-in-law

7. Other (please specify)

Responses

8. What is the gender of the person you are caring for?

Female Male Total

Number

24 13 37

Percent

64.9 35.1 100.0

PSA 5

3 of 57

2013

Purple Ribbon Task Force

Survey of Family Caregivers of People With Alzheimer's Disease and Related Dementias.

Responses

9. What is the age of the person you are caring for?

55-64 65-74 75-84 85-94 95 or older Total

Number

3 9 13 11 1 37

Percent

8.1 24.3 35.1 29.7

2.7 100.0

10. Where does the person you are caring for live?

Responses

Alone in their own home In their own home, with others In your home Assisted living facility Nursing home Other (please specify below) Total

Number

2 4 12 6 6 6 36

Percent

5.6 11.1 33.3 16.7 16.7 16.7 100.0

10. Other (please specify) Deceased In her own home, with her husband, my father who is 94 and has memory issues as well. In their own home with 24 hour care Independent Living Facility with spouse Memory care facility Neighbor was living alone until this past Friday Was in nursing home, but passed-away 2005 With my brother with 24 hour care

Responses

11. What is the diagnosis of the person you are caring for?

11a. Not diagnosed 11b. Alzheimer's disease 11d. Frontotemporal Dementia 11e. Lewy Body Dementia 11f. Vascular Dementia 11g. Memory Loss 11h. Dementia 11i. Stroke 11j. Parkinson's disease 11k. Don't know Total

Number

1 26

3 1 8 5 8 2 2 1 57

Percent

1.8% 45.6%

5.3% 1.8% 14.0% 8.8% 14.0% 3.5% 3.5% 1.8% 100.0%

PSA 5

4 of 57

2013

Purple Ribbon Task Force

Survey of Family Caregivers of People With Alzheimer's Disease and Related Dementias.

11. Other (please specify) End-Stage Alzheimer's I have recognized signs of cognitive impairment & memory loss Primary Progressive Aphasia

12. Who diagnosed the person you are caring for?

Responses

Family doctor/Primary care physician Neurologist Geriatrician (Florida) Memory Disorder Clinic Other (please specify below) Total

Number

10 21

3 1 1 36

Percent

27.8 58.3

8.3 2.8 2.8 100.0

12. Other (please specify) Doctor at USF Byrd Clinic Was not diagnosed until he was removed from his home Friday 4-19

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

Responses

No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total

Number

1 8 3 5 20 37

Percent

2.7 21.6

8.1 13.5 54.1 100.0

13b. Taking care of his/her residence or personal living spaces, such as cleaning, managing money, or preparing meals

Number

Percent

Responses

Some Help Quite a Bit of Help A Lot of Help Total

2

5.7

2

5.7

31

88.6

35

100.0

13c. Communicating with others

Responses

No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total

Number

2 3 7 9 16 37

Percent

5.4 8.1 18.9 24.3 43.2 100.0

PSA 5

5 of 57

2013

Purple Ribbon Task Force

Survey of Family Caregivers of People With Alzheimer's Disease and Related Dementias.

13d. Seeing or hearing

Responses

No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total

Number

9 7 8 5 8 37

Percent

24.3 18.9 21.6 13.5 21.6 100.0

13e. Moving around within the house

Responses

No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total

Number

11 5 4 6

11 37

Percent

29.7 13.5 10.8 16.2 29.7 100.0

Responses

13f. Transportation outside of the home

A Little Help Some Help Quite a Bit of Help A Lot of Help Total

Number

3 1 2 31 37

Percent

8.1 2.7 5.4 83.8 100.0

13g. Getting along with people

Responses

No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total

Number

9 4 10 6 6 35

Percent

25.7 11.4 28.6 17.1 17.1 100.0

Responses

13h. Relieving/decreasing anxiety or depression

No Help A Little Help Some Help Quite a Bit of Help A Lot of Help Total

Number

5 3 8 9 10 35

Percent

14.3 8.6

22.9 25.7 28.6 100.0

PSA 5

6 of 57

2013

Purple Ribbon Task Force

Survey of Family Caregivers of People With Alzheimer's Disease and Related Dementias.

Responses

Some Help A Lot of Help Total

13. Other

Number

2 6 8

Percent

25.0 75.0 100.0

13. Other (please specify) Comprehending words, numbers, object. Very angry. Dealing with semi-trained CNA'S Finances, Maintaining condo as person is in ALF, applying for assistance Grocery shopping Has been in nursing home 8 months I care for a husband and long distance, mother Incontinence care Meals, bathing, dressing, getting up and down, walking My Mother was totally bedridden for the last year. She passed away yesterday. Safety, nutrition, health care regimen/medications Unable to speak Very helpless

Responses

14. Average number of hours per week providing care

4 6 8 10 12 14 18 20 21 25 40 45 70 100 110 120 122 140 160 164 168 Total

Number

1 2 2 2 1 2 1 4 1 1 2 1 4 1 1 1 1 1 1 1 3 34

Percent

2.9 5.9 5.9 5.9 2.9 5.9 2.9 11.8 2.9 2.9 5.9 2.9 11.8 2.9 2.9 2.9 2.9 2.9 2.9 2.9 8.8 100.0

PSA 5

7 of 57

2013

Purple Ribbon Task Force

Survey of Family Caregivers of People With Alzheimer's Disease and Related Dementias.

15. Do you have others helping you with the care of this person?

Responses

Yes No Total

Number

31 5

36

Percent

86.1 13.9 100.0

16. If yes, who helps you with your caregiving responsibilities?

Responses

16a. Spouse 16b. Adult child 16c. Sibling 16e. Friend 16f. Relative (aunt/uncle/cousin) 16g. Paid help 16. Other Total

Number

7 3 6 1 2 11 10 40

Percent

17.5% 7.5%

15.0% 2.5% 5.0%

27.5% 25.0% 100.0%

16. Other (please specify) Adult Day care 2 days a week Adult Day Care-Neighborly Care Network Assisted living staff Companion/HHA Father Her elderly husband who I also help My father ensures she takes her daily pills. My mom's husband Nursing Home Staff She lives in a memory care unit Younger child

PSA 5

8 of 57

2013

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