Family Members' Views: What is Quality in Assisted Living Facilities Providing Care to People with Dementia?. APPENDIX C: Self-Administered Demographic Survey for Participants and Moderator Guides

02/01/1997

ALZHEIMER'S ASSOCIATION FOCUS GROUP
DEMOGRAPHIC SURVEY
First Name_______________ Birth Date_______________
Confidentiality Statement. This survey will be used in combination with the focus group information. We realize that some people do not like talking about certain topics, like finances, in front of people they don't know. For this reason, we are asking you to answer the following basic demographic and economic questions. Answering these questions is purely voluntary, and refusing to answer any question will not affect your participation in the focus group. However, responding to these items will give us better information to go with the focus groups. It will also help us understand how different people feel about quality. Please include only your first name on this form. The form will only be used by people working on this research project. Your name and answers to these questions will never be available to any public or private agency.

The first few questions are about you and your background.

  1. Are you male or female?
    1. Male
    2. Female

       

  2. Are you married, widowed, divorced or never been married?
    1. Married
    2. Widowed
    3. Divorced
    4. Never married

       

  3. Which of the following best describes your race?
    1. White
    2. African American
    3. Asian or Pacific Islander
    4. American Indian
    5. Alaskan Native

       

  4. Are you of Hispanic origin or descent?
    1. Yes
    2. No

       

  5. Are you the spouse of child of a person in an assisted living facility?
    1. Spouse ----->Skip to Question 7
    2. Child
    3. Son-in-law or daughter-in-law

       

  6. Do you provide financial support to your family member who is in an assisted living facility?
    1. Yes
    2. No

       

The next questions are about your family member who lives in an assisted living facility.

  1. Check all of the services your family member used before entering the assisted living facility.
    _____ Home health Care (e.g., nursing, physical therapy)
    _____ Respite Care
    _____ Home Chore Services (e.g., light housekeeping or Home Health Aide (e.g., help with bathing, dressing, etc.)
    _____ Units Attached to Nursing Homes
    _____ Residential Care Facility, Homes for Adults, or Assisted Living
    _____ Nursing Home
    _____ Other (describe) _________________________

     

  2. How long has your family member lived in the current assisted living facility?
    __________

     

  3. Do you think your family member will be able to stay in the facility indefinitely?
    1. Yes
    2. No

       

  4. How much does your family member pay per month to live in the facility?
    $__________

     

  5. What kind of room does this cover?
    1. Private Apartment (with bath and full or partial kitchen)
    2. Private room with private bath
    3. Private room with shared bath
    4. Semi private room with private bath
    5. Semi private room with shared bath
    6. Other (describe) _________________________

       

  6. What kind of services does this monthly fee cover?
    __________________________________________________________________
    __________________________________________________________________

     

  7. Did your family member live in any other assisted living facility prior to the one he or she currently lives in?
    1. Yes
    2. No

       

  8. What is the yearly income range of your family member who lives in the assisted living facility? (If you are a spouse, what is your combined yearly income?)
    1. Less than $1,200
    2. Between $1,201 and $4,999
    3. Between $5,500 and $8,999
    4. Between $9,000 and $13,999
    5. Between $14,000 and 24,999
    6. Between $25,000 and $50,000
    7. More than $50,000(8) I don't know

MODERATOR GUIDE:
MEASURING QUALITY IN ASSISTED LIVING FACILITIES

INTRODUCTION

(The introduction may be individualized as desired. Before to ask the things in bold. Things in italics are for the moderator's attention. Feel free to write on this guide as you go along.)

Thank you for coming.

We really appreciate your help; you are the experts here today; we want to give people a chance to tell us what their experiences have been

Confidentiality Statement: (Read and make sure all have the Consent Form) This focus group is being conducted by Research Triangle Institute for a project funded by the Alzheimer's Association. In today's discussion we will be talking about your experiences with assisted living facilities. Your participation in the focus group is voluntary and confidential, and you may refuse to comment on any question that is asked. Nothing you might say about a particular facility will ever be made public or reported in any way that would allow you to be identified. Your participation in today's group will not affect your family member's care, nor will the information be released to the facility where they are living.

While the meetings will be tape recorded, the recording is only to help us make sure we "hear" everything that's said. Only people working on this project will ever hear any of the recordings or read the notes we take. The same thing goes for the little questionnaire that you filled out. We will provide the local Alzheimer's Association chapter with copies of our findings, and you may have a copy if you'd like.

I am _______________, and _______________, is going to be taking notes so that I won't have to worry about it. (Be neutral, non-threatening, familiar. You may want to say something personal about yourself, such as a story from your life or why this topic is important to you.)

The purpose of this group meeting is to find out about people's perceptions and experiences with quality in assisted living facilities. We are going to use this information as part of a larger research project.

The entire session will be tape recorded. To protect everyone's privacy, we will use first names only in this room. This way, your responses will not be linked to you personally, so feel free to say what ever is on your mind.

There are no right or wrong answers. We want to hear what you think. I'm not planning to do most of the talking. I do have several things for us to talk about, though, so I'll try to keep moving things along.

We also want to know where your opinions differ from each other and from others we have already spoken to.

There is no need to raise hands. Speak right up, but please respect others when they are talking. When the discussion is over, please respect the privacy of your fellow group members.

This discussion will last about 2 hours. Is there anyone who can't stay? Any questions? Now lets begin.

Let's start by going around the room and each person introduce yourself, and say something about your family member in assisted living. (10 minutes)

  1. Let's talk about what kind of help or supervision your family member needs.

    (10 minutes)

  2. How did you decide on assisted living for your family member, instead of some other type of arrangement?

    (This section, through #5, 35 minutes)

    (Probe: did you consider other options such as a _______________ [INSERT NAME OR B&C IN THE STATE] facility or nursing home? Why did you chose assisted living?)

  3. What were you and your family looking for in a facility?

    Flipchart

  4. What were your concerns about the type of care that assisted living provides?

  5. How did you choose the facility?

    (Probes: Did you visit other facilities? Did you ask friends or family for recommendations? Was the distance from your home a factor?)

  6. Have your family member's needs changed since they've been in the facility?

    (10 minutes)

  7. If you had a friend in your situation who wanted your advice about what things to look for in choosing a good assisted living facility, what would you tell him or her?

    Flipchart (20 minutes)

  8. For that same friend (the one in your situation), knowing what you know now what kinds of things would you tell him to look out for or avoid?

    Flipchart (15 minutes)

  9. Have you changed your thinking about what is important to you in an assisted living facility?

    (20 minutes)

    (Probe: would you look for different things now? Are there problems you or your family member have had that would make you ask different questions?

    Optional question, if there is time:

    1. What do you think are the most important things to your family member?
      Do you think that your family member is satisfied with the quality of the assisted living facility?
      Are you satisfied? Can you tell me one good thing and one bad thing about the facility?

     

  10. We are almost finished now. Let's look at all these things you've talked about. The things you were looking for when you first started looking, and the things that you know now. Is there anything else we need to add to the list? I have some colored stickers here and would like you to come up front and put your stickers on what you thing are the three most important things. Don't put more than one sticker on any one thing.

I want to thank you all for coming today and talking with us. What you have said will be very useful as we try to help policymakers better understand what people need and want in assisted living. It is alright to talk to others about what we discussed here today, but please remember to respect each other's privacy, and don't mention anyone's name outside this room.

MEASURING QUALITY IN ASSISTED LIVING FACILITIES
MODERATOR GUIDE FOR SESSION OF PEOPLE WITH DISCHARGED FAMILY MEMBERS

INTRODUCTION

Thank you for coming.

We really appreciate your help; you are the experts here today; we want to give people a chance to tell us what their experiences have been

Confidentiality Statement: This focus group is being conducted by Research Triangle Institute for a project funded by the Alzheimer's Association. In today's discussion we will be talking about your experiences with assisted living facilities. Your participation in the focus group is voluntary and confidential, and you may refuse to comment on any question that is asked. Nothing you might say about a particular facility will ever be made public or reported in any way that would allow you to be identified. Your participation in today's group will not affect your family member's care, nor will the information be released to the facility where they are living.

While the meetings will be tape recorded, the recording is only to help us make sure we "hear" everything that's said. Only people working on this project will ever hear any of the recordings or read the notes we take. The same thing goes for the little questionnaire that you filled out. We will provide the local Alzheimer's Association chapter with copies of our findings, and you may have a copy if you'd like.

I am _______________, and _______________, is going to be taking notes so that I won't have to worry about it. (Be neutral, non-threatening, familiar)

(You may want to say something personal about yourself, such as a story from your life or why this topic is important to you.)

The purpose of this group meeting is to find out about people's perceptions and experiences with quality in assisted living facilities. We are going to use this information as part of a larger research project.

The entire session will be tape recorded. To protect everyone's privacy, we will use first names only in this room. This way, your responses will not be linked to you personally, so feel free to say what ever is on your mind.

There are no right or wrong answers. We want to hear what you think. I'm not planning to do most of the talking. I do have several things for us to talk about, though, so I'll try to keep moving things along.

We also want to know where your opinions differ from each other and from others we have already spoken to.

There is no need to raise hands. Speak right up, but please respect others when they are talking. When the discussion is over, please respect the privacy of your fellow group members

This discussion will last about 2 hours. Is there anyone who can't stay? Any questions? Now lets begin.

Let's start by going around the room and each person introduce yourself, and say something about your family member who was in assisted living. (10 minutes)

  1. Let's talk about what kind of help or supervision your family member needs.

    (10 minutes)

  2. How did you decide on assisted living for your family member, instead of some other type of arrangement?

    (This section, through #5, 35 minutes)

    (probe: did you consider other options such as adult foster care, residential care? Why did you chose assisted living?)

  3. What were you and your family looking for in a facility?

    Flipchart

    What were your concernsabout the type of care that assisted living provides?

  4. Why was your family member discharged from the facility?

  5. Did your family member's needs change while they were in the facility?

    (10 minutes)

  6. What were your expectations about the facility continuing to meet your family member's needs as they changed?

  7. If you had a friend in your situation who wanted your advice about what things to look for in choosing a good assisted living facility, what would you tell him or her?

    Flipchart (20 minutes)

  8. For that same friend (the one in your situation), knowing what you know now what kinds of things would you tell him to look out for or avoid?

    Flipchart (15 minutes)

  9. Have you changed your thinking about what is important to you in an assisted living facility?

    (20 minutes)

    (Probe: would you look for different things now? Are there problems you or your family member have had that would make you ask different questions?

    Optional question, if there is time:

    1. What do you think are the most important things to your family member?
      Do you think that your family member was satisfied with the quality of the assisted living facility?
      Were you satisfied? Can you tell me one good thing and one bad thing about the facility?

     

  10. We are almost finished now. Let's look at all these things you've talked about. The things you were looking for when you first started looking, and the things that you know now. Is there anything else we need to add to the list? I have some colored stickers here and would like you to come up front and put your stickers on what you thing are the three most important things. Don't put more than one sticker on any one thing.

I want to thank you all for coming today and talking with us. What you have said will be very useful as we try to help policymakers better understand what people need and want in assisted living. It is alright to talk to others about what we discussed here today, but please remember to respect each other's privacy, and don't mention anyone's name outside this room.

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