Caregiver Survey

MODERNIZATION GRANT: CAREGIVER SURVEY QUESTIONS
FOR TRANSITIONAL PLANNING GUIDE PROJECT

Introduction

Reena and Mary Centre of the Archdiocese of Toronto (Mary Centre), received funding from the Ministry of Community & Social Services (MCSS) to revise and update the 2006 Transitional Guidefor persons aging with a developmental disability (DD). The purpose of the Transitional Guide is to assist caregivers and health and social service organizations in early planning for transitions in care needs for persons living with a DD.

As part of this project, we value your input. We have created an anonymous survey , which should take you about 20 minutes to complete Please complete this survey by June 8, 2018. Thank you in advance for your assistance and participation. If you have any questions or wish to speak further with the project leads, please contact Mindy Ginsler at ginslerm@yahoo.ca or Christel Galea at qualityhmc@gmail.com.

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* 1. CAREGIVER DEMOGRAPHICS: Please check the age range of the caregiver(s) responding to this survey.

20-30 years of age

31-45 years of age

46-64 years of age

65 years of age and over

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* 2. CAREGIVER DEMOGRAPHICS: Please choose the box that best describes your relationship to the person that you are supporting.

I am the parent of the person

I am a sibling of the person

I am extended family of the person

I am a friend of the person

Other (please specify)

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* 3. CAREGIVER DEMOGRAPHICS: In what region/municipality are you providing care for the person with DD?

York Region

Toronto and surrounding area

Peel Region

Durham

Hamilton

Niagara

Ottawa

Thunder Bay

North Bay

Kingston

Other (please specify)

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* 4. CAREGIVER DEMOGRAPHICS: What is the primary language spoken at home?

English

French

Other (please specify)

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* 5. CAREGIVER DEMOGRAPHICS: I have been caring for the person with a Developmental Disability for?

Less that 6 months

Between 6-12 months

Between 1 and 5 years

More than 5 years

Unsure or don't know

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* 6. CAREGIVER DEMOGRAPHICS: Do you have access to a primary care physician/family doctor to support the person?

Yes

Other (please specify)

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* 7. CAREGIVER DEMOGRAPHICS: Do you have access to tools and resources to help you plan and/or access care for the person?

Yes

Other (please specify)

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* 8. CAREGIVER DEMOGRAPHICS: If you have tools and resources to help plan and access care for the person, which resources/tools are the most useful?

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* 9. CAREGIVER DEMOGRAPHICS: Personally, I am experiencing....(Check all that apply)

No health problems; I am in good health

Aging and/or frailty

Short term acute illness eg. expected to resolve within days/weeks)

Chronic or ongoing illness (eg. diabetes, heart condition, stroke)

A condition that worsens over time

Nearing the end of life (e.g.palliative)

Physical disabilities or illness

Alzheimer's Disease or other dementia

Another condition that impairs my thinking or memory

Mental Health Disorder/illness (eg. depression, anxiety)

Developmental Disability or illness

Prefer not to say

Other (please specify)

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* 10. CAREGIVER DEMOGRAPHICS: The person I am caring for currently receives/has received the following types of services/care provided by health, community and/or social services organizations (Select ALL that apply)

Not applicable; no formal services received

Grooming (e.g. hair washing, brushing teeth)

Personal Care (e.g. bathing, dressing, transfers to/from bed)

Giving medicines or cues/reminders to take medicines

Health/nursing/medical procedures (e.g. diabetic injections or wound care)

Social/companionship support

Support that enables you or other family members/friends to take a break

Emotional support (e.g. reassurance or encouragement)

Preventing or addressing a behavior (e.g. wandering or confusion)

Meal preparation

Household tasks (e.g., cleaning, laundry)

Financial tasks (e.g., help with bills, banking, insurance)

Shopping or errands

Transportation

Going to medical appointments with him/her

Organizing care at home or in a residential setting/other housing alternative

Finding care within health/ community service/social service organizations

Communicating with healthcare/social service providers

Assisting in completing applications for Long-Term Care / housing or other alternatives

Social services

Other (please specify)

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* 11. CAREGIVER DEMOGRAPHICS: As a Caregiver, the biggest barriers I have encountered is/are (Select ALL that apply):

Little to no barriers at this time

Access to knowledge about what is available and who to contact

Getting needed care at home

Getting into a residential setting, long-term care home or other

The person I am caring for resists help or assistance from healthcare /social services providers

Logistical challenges with getting to care (transportation, or weather, or time of day/night)

Covering costs of care (e.g. drugs, service fees)

Scheduling of appointments or care for when I am available

Balancing caregiving responsibilities with other life responsibilities

Language or cultural barriers

Lack of collaboration with healthcare/social service providers

Finding time/space to take care of myself

Other (please specify)

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* 12. CAREGIVER DEMOGRAPHICS: The most positive experience that I have had as a caregiver caring for an aging person with DD is /was …

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* 13. CAREGIVER DEMOGRAPHICS: If I could change one thing to improve my experience as a caregiver caring for an aging person with DD, it would be…

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* 14. PERSON LIVING WITH A DEVELOPMENTAL DISABILITY (DD) DEMOGRAPHICS: What age range is the person living with DD, that you are caring for?

20-30 years of age

31-45 years of age

46-64 years of age

65 years of age and older

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* 15. PERSON LIVING WITH A DD DEMOGRAPHICS:In what region/municipality is care being provided? Check where care is being provided

Same residence/location as caregiver(s)

Alternative location within the same region/municipality

Other (please specify)

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* 16. PERSON LIVING WITH A DD DEMOGRAPHICS: Diagnosis/ Relevant Medical History

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* 17. QUESTIONS REGARDING PLANNING AND SUPPORT: What is your single most important priority/goal as a caregiver providing care for the person living with a DD?

Maintain the family unit for as long as possible

Support independent living within the community

Prepare for the future

Financial Planning

Respite Care/Caregiver Relief

Other (please specify)

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* 18. QUESTIONS REGARDING PLANNING AND SUPPORT: Are you ready to plan for the care needs of the person with DD when you can no longer fulfill your caregiving role due to the changing care needs of the person who is aging (e.g. wandering, decreased mobility, confusion)?

No, I am not thinking about the plan now

I am beginning to think about the plan

I have begun gathering and exploring information /resources to develop a plan

I am in the process of completing the plan and submitting the plan

I have completed the plan (maintenance)

Other (please specify)

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* 19. QUESTIONS REGARDING PLANNING AND SUPPORT: If you have completed a plan, did you have help/support to develop the plan?

Yes

Partially

Other (please specify)

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* 20. QUESTIONS REGARDING PLANNING AND SUPPORT: If you have completed a plan, do all the relevant caregivers/service providers have access to these plans?

Yes

Partially

Other (please specify)

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* 21. QUESTIONS REGARDING PLANNING AND SUPPORT: If you have completed a plan, how often do you and the person with DD update the plan?

Annually

As needed, when there are changes

Seldom

Other (please specify)

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* 22. QUESTIONS REGARDING PLANNING AND SUPPORT: Do you understand the wishes, beliefs, and preferences of the person with the DD?

Yes

Other (please specify)

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* 23. QUESTIONS REGARDING PLANNING AND SUPPORT: Are you aware of the signs and symptoms of early aging and the need for early recognition and detection of health issues?

Yes

Some and I would like to know more:

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* 24. QUESTIONS REGARDING PLANNING AND SUPPORT: How are you monitoring changes in physical (e.g. walking, eating, managing personal care needs) and cognitive (e.g. behavior, memory) capabilities? (Check all that apply).

Keep an ongoing medical and behavioral history and/or record when there is a change in physical/cognitive capabilities

Regularly (e.g. once or twice a year) document physical/cognitive changes and share with care providers

Verbally share with my health and/or social services providers my findings of changes in behavior/physical

None of the above

Other (please specify)

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* 25. QUESTIONS ABOUT PLANNING AND SUPPORT:Would you be interested in using early recognition, detection and screening tools to identify changes in care needs that could be reliable and easy to use for the person aging with DD?

Yes

Maybe

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* 26. QUESTIONS REGARDING PLANNING AND SUPPORT: Delivery of community based supports and services to aging adults with DD is essential for success in order to remain in the community for as long as safely possible. What community – based programs/services have you accessed (Check all that apply)

Therapeutic programming

Geriatric physicians/services

Home & Community Care (Case Management, Nursing, Physiotherapist, OT, Dietician, Personal Support Worker)

Healthy Senior Living and Wellness Programs

Developmental Disabilities supports and services

Community Support Services (Alzheimer Society, Adult Day Program, Transportation etc.)

Financial Planning Services/Supports

Other (please specify)

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* 27. QUESTIONS REGARDING PLANNING AND SUPPORTS: Would you like support to access the resources listed above (Q26) or other supports/resources?

Yes

Please specify/comment:

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* 28. QUESTIONS REGARDING PLANNING AND SUPPORT: What community - based resources do you feel are a priority for your wellness as a caregiver/ provider caring for persons aging and living with DD to know and/or be linked to? (Check all that apply)

Health services (e.g. How to contact the Health & Community Care services)

Senior services & programs

Access to respite care

Healthy living/wellness programs/services

Knowledge of local community programs/services

Financial information

Future / Planning resources

Housing

Other supports (please specify)

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* 29. QUESTIONS REGARDING PLANNING AND SUPPORT: Of the following list, check areas where you require more information to support your planning? (Check ALL that apply)

Getting Ready: When to start planning

Documentation: Keeping a History

Values and Principles of Transition Planning

General Information: Aging with a Developmental Disability

What you should know: Environmental Factors and Lifestyle

Things to consider: Physical changes in the home

Health and Aging

Planning for the future: Advanced Care Planning

Finances

How to recognize dementia

Role of the family and agencies

Developmental Services and Supports

Coordinated Access to Health and Long Term Care

Confidentiality and sharing information

Checklists for planning (variety)

Developing your Vision

Implementing your vision

Developing a team: Developmental Services and Long Term Care

Transitioning to a new home

Crisis Support

Community Options: Residential, Day, respite and other

Inclusion: Recreation, Volunteerism and more

Accessible parking

Transportation

Ontario Partnership on Aging and Developmental Disabilities (OPADD) and other resources

Other (please specify)

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* 30. QUESTIONS REGARDING PLANNING AND SUPPORT: In what format would you prefer the guide “Aging with a Developmental Disability: Planning for Success ” be available for your use?

Computer web-based access with links to resources, forms, and information

Paper copy version

Both paper and web-based versions

USB storage

Different languages

Other (please specify)and/or comment :

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* 31. QUESTIONS REGARDING PLANNING AND SUPPORT: Any additional comments or suggestions that can assist us in planning the new guide called Aging with a Developmental Disability: Planning for Success?