What Should a Family Caregiver Assessment Include?
 
  Caregivers Count Too!
An Online Toolkit to Help Practitioners Assess the Needs of Family Caregivers
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Introduction
Section 1 - Getting Started
What is the Caregivers Count Too! Toolkit?
Who Should Use This Toolkit?
How is the Toolkit Organized?
Definitions
Section 2 - Vital & Vulnerable: Family Caregivers
Who Are Family Caregivers?
Why Are Family Caregivers Vital to Health Care and Long-Term Care Today?
Why Should We Assess the Needs of Family Caregivers?
Online Resources for More Information
Data Sources for Statistics
Section 3 - The Nuts & Bolts of Caregiver Assessment
Getting Started
What Should a Family Caregiver Assessment Include?
Who Should Be Assessed?
Who Should Conduct a Family Caregiver Assessment?
When Should a Family Caregiver Assessment Happen?
Where Should a Family Caregiver Assessment Take Place?
Fundamental Principles of Caregiver Assessment
Section 4 - Wrapping Up
Next Steps
Examples of Caregiver Assessment Tools
FCA Resources on Caregiver Assessment
Selected Annotated Bibliography for Caregiver Assessment
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What Should a Family Caregiver Assessment Include?

While the assessment approach needs to be tailored to your service setting and program, any caregiver assessment should:

  • Identify the primary caregiver and other family and friends who are involved in arranging, coordinating or providing care.
  • Approach issues from the caregiver’s perspective.
  • Improve caregivers’ understanding of their role and what they need to know to carry out tasks.
  • Give practitioners information to develop a care plan with measurable outcomes for caregivers.
  • Address services available for the caregiver and provide appropriate and timely referral for services.
  • Be no longer than necessary.

Experts in serving caregivers and researchers who focus on assessment point to seven categories of information (i.e. the domains or content area) to include in a caregiver assessment:

  1. Background on the caregiver and the caregiving situation
  2. Caregiver’s perception of health and functional status of the care recipient
  3. Caregiver’s values and preferences with respect to everyday living and care provision
  4. Health and well-being of the caregiver
  5. Consequences of caregiving on the caregiver
  6. Care-provision requirements (skills, abilities, knowledge)
  7. Resources to support the caregiver.

These categories of information are applicable across settings (e.g., home, hospital, community program) but need not be measured in every assessment.  Specific content areas and questions may differ for:

  1. Initial assessments compared to reassessments (the latter focus on what has changed over time)
  2. New versus continuing care situations
  3. An acute episode prompting a change in caregiving versus an ongoing need
  4. Type of setting and the focus of services.

The seven recommended categories of information, areas to assess, and possible questions for each area are shown in the following table:

Information Category

Areas to Assess

Possible Questions

Context

♦ Caregiver relationship to care recipient

♦ Physical environment (home, facility)

♦ Household status (number in home, etc.)

♦ Financial status

♦ Quality of family relationships

♦ Duration of caregiving

♦ Employment status (work/home/ volunteer)

♦ What is the caregiver’s relationship to the care recipient?

♦ How long has he/she been in the caregiving role?

♦ Does the care recipient live in the same household with the caregiver?

♦ Is the caregiver married? Have children? How many people live in the caregiver’s household?

♦ Are other family members or friends involved in the care?

♦ Is the caregiver currently employed? Full-time or part-time?

♦ What is the caregiver’s household income?

♦ How would the caregiver rate his/her quality of family relationships?

 

Caregiver’s Perception of Health and Functional Status of Care Recipient

 

♦ Activities of daily living (ADLs; bathing, dressing) and need for supervision

♦ Instrumental Activities of Daily Living (IADLs; managing finances, using the telephone)

♦ Psycho-social needs

♦ Cognitive impairment

♦ Behavioral problems

♦ Medical tests and procedures

♦ Can the care recipient carry out ADLs without assistance (bathing, dressing, etc.)?

♦ Can the care recipient carry out IADLs without assistance (managing finances, shopping)?

♦ Can the care recipient administer his/her medications correctly?

♦ Does the care recipient have any mental health diagnoses or emotional problems?

♦ Does the care recipient have any memory loss or cognitive impairment?

♦ Does the care recipient have any behavioral problems? How frequently do they occur and how much do they bother or upset the caregiver when they happen?

♦ What medical tests and procedures have been done or are needed?

Caregiver Values and Preferences

 

♦ Caregiver/care recipient willingness to assume/accept care

♦ Perceived filial obligation to provide care

♦ Culturally based norms

♦ Preferences for scheduling and delivery of care and services

♦ Is the caregiver willing to assume the caregiver role? Is the care recipient willing to accept care?

♦ Does the caregiver feel he/she is obligated to provide care?

♦ What types of care arrangements are considered culturally acceptable for this family?

♦ What are the caregiver’s (and the care recipient’s) preferences for the scheduling and delivery of care and services?

Well-being of the Caregiver

 

♦ Self-rated health

♦ Health conditions and symptoms

♦ Depression or other emotional distress (e.g., anxiety)

♦ Life satisfaction/quality of life

♦ How does the caregiver rate his/her own health? Does the caregiver rate his/her health better, about the same, or worse than it was 6 months ago?

♦ Does the caregiver have any health conditions or symptoms?

♦ How often in the past 6 months has the caregiver had a medical exam or received treatment for physical health problems from a health care practitioner?

♦ Depression Scale (See Selected Measures in Appendix III)

♦ How often does the caregiver feel anxious or angry when he/she is around the care recipient?

♦ How often does the caregiver get a full night’s sleep?

♦ How does the caregiver rate his/her life satisfaction and/or quality of life?

 

Consequences of Caregiving

 

♦ Perceived challenges

  • Social isolation
  • Work strain
  • Emotional and physical health strain
  • Financial strain
  • Family relationship strain
  • Difficulties with formal providers

♦ Perceived benefits

  • Satisfaction of helping family member
  • Developing new skills and competencies
  • Improved family relationships

♦ Perceived challenges

  • Does the caregiver have a social support network or is he/she isolated?
  • Does the caregiver suffer any work-related difficulties due to the caregiving role?
  • Does the caregiver suffer from any emotional and/or physical health problems as a result of caregiving?
  • How much does the caregiver’s health stand in the way of doing things he/she wants to do?
  • What has been the financial strain, if any, on the caregiver due to his/her caregiving role?
  • How much disagreement has the caregiver experienced with other family members over particular care issues?

♦ Perceived benefits

  • Does the caregiver feel satisfaction in helping a family member?
  • Does the caregiver feel he/she has developed new skills and knowledge as a result of caregiving?
  • Has there been an improvement in family relationships (general closeness, communication, similarity of views, degree of getting along) as a result of the caregiving situation?

Caregiver Skills/ Abilities/Knowledge to Provide Care

 

♦ Caregiving confidence and competencies

♦ Appropriate knowledge of medical care tasks (wound care, etc.)

♦ How knowledgeable does the caregiver feel about the care recipient’s condition?

♦ What are the skills and abilities needed to provide care for the care recipient?

♦ How would the caregiver rate his/her confidence and competence in these areas?

♦ Does the caregiver have the appropriate knowledge of medical care tasks (wound care, ability to administer medications correctly, etc.) and transfer techniques (moving from bed to chair, etc.)

 

Caregiver Resources

♦ Helping network and perceived social support

♦ Existing or potential strengths (e.g., what is presently going well)

♦ Coping strategies

♦ Financial resources (health care and service benefits, entitlements such as Veteran’s Affairs, Medicare)

♦ Community resources and services (caregiver support programs, religious organizations, volunteer agencies)

♦ Can the caregiver rely on his/her social support network for help (i.e. respite)?

♦ What are the caregiver’s coping strategies? Are these healthy/constructive?

♦ Has the caregiver accessed all financial benefits and entitlements he/she or care recipient is eligible for (e.g., Veteran’s Affairs)?

♦ What other community resources/services is the caregiver utilizing or aware of (e.g., caregiver support groups, religious organizations)?


Things to Keep in Mind:

  • Whenever possible, use established measures that are:
  • Be as simple and direct as possible. For example, when adapting a measure developed for research purposes with four response categories (from “strongly agree” to “strongly disagree), using just two (“agree” and disagree”) may be sufficient and more practical. 
  • Control length by using filter questions and making some sections optional.
  • Know where your caregiver population is coming from and be prepared to meet them. This means being able to communicate in their language and understand their cultural values as these affect caregiving and service use.
  • Administer the assessment questions in a systematic way to all family caregivers.

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