Intent:
To assess the person’s informal caregiver support system. This is different from a formal relationship that the person may have with a home care agency.
Definition:
Helper 1 — The primary informal helper may be a family member, friend or neighbor, but not a paid service provider. It is not required that the caregiver actually lives with the person, but he or she must visit regularly, and respond to the person’s needs. This is the individual the person views as most helpful to him or her (i.e., who can most be relied on).
Helper 2 — The secondary informal helper is the individual who, after the primary helper, the person most relies on to help or give advice and counsel when needed.
Process:
Ask the person if he or she can identify their two primary informal helpers. The person may identify several people who “would help” if asked. Shape the questions with specific statements: “Who helps you shop?” “Who helps with cleaning around the house?” “Who helps you with your meals, bathing, dressing, etc.” “Who helps you pay your bills?” “Who drives you when you need a ride?” If the person does not currently have a “helper,” ask if there is someone who “would help” if needed. If person is not able to understand or respond to questions, or gives responses that are unclear, evasive or untrue (e.g. refers to her husband when you know the husband is deceased), review any agency documentation or ask informal helpers if available.
It is important to understand that some helpers may not be described as such by the person. They do things consistent with “expected” social relationships — it is what the person expects a daughter or wife to “do.” Thus, it is useful to focus the person’s attention on who provides needed assistance or support, rather than using the label “caregiver”.
Relationship to person
Definition:
This refers to the nature of the relationship between the person and the informal helper(s). Consider the quality of the relationship, not simply as the relationship is defined by the law or social customs. For example, if the person has a non-related “partner” and it appears (and they consider) that the relationship is “like a marriage” but is not legally recognized, code as Partner/significant other.
Process:
Ask the person and the helper (where available) about the nature of their relationship. Validate the significance of their relationship, as they define it.
Coding:
Code both columns (Helper 1 and 2) with the category below that best describes the relationship.
Child or child-in-law
Spouse
Partner/significant other
Parent/guardian
Sibling
Other relative
Friend
Neighbor
No informal helper
Lives with person
Intent:
To assess whether the person lives with the informal helper(s), and the duration of the living arrangement.
Definition:
An informal helper is said to live with the person if the person and helper share the same space (house, apartment/flat). This does not include living in an adjacent or neighboring apartment/flat/house.
Coding:
Code both columns (Helper 1 and 2) using the following codes.
No
Yes, 6 months or less
Yes, more than 6 months
No informal helper
Areas Of Informal Help During The Last 3 Days
Definition:
IADL
help – Includes activities such as meal preparation, ordinary house
work, managing finances or medications, phone use, shopping and transportation.
ADL help — Includes activities such as bed mobility, transferring, walking, dressing, eating, toilet use, personal hygiene and bathing.
Process:
For IADLs, ask the person and informal helper (when available) if support is given in meal preparation, ordinary housework, managing finances or medications, phone use, shopping and transportation. Support can range from the helper doing light housework, to doing all of the shopping and housework.
For ADLs, ask the person and informal helper (when available) if support is given in ADL areas such as bed mobility, transferring, walking, dressing, eating, toilet use, personal hygiene and bathing. Support can range from the helper “being there just in case” to provide reassurance or ensure safety, to the helper providing complete ADL care.
Coding:
Code yes if the helper is assisting the person with IADLs or ADL care.
No
Yes
No informal helper