Alzheimer's Disease Supportive Services Program (ADSSP) Data Collection

Alzheimer’s Disease Supportive Services Program

Template for Data Collection Information

This form can be used by grantees to collect data on primary caregivers and persons with dementia. Grantees may choose to collect additional elements.

PRIMARY CAREGIVER

Primary Caregiver – the person who provides the most care to an individual with dementia or who is most responsible for directing and managing the care of an individual with dementia. This definition refers to informal caregivers, such as family or friends, rather than formal caregivers, such as paid healthcare professionals. While some people with dementia have more than one (1) caregiver, for the purposes of this data collection, only collect data from the one (1) person who most closely fits the role of primary caregiver. In states with consumer direction, the primary informal caregiver may also be a paid caregiver.

Date: ______________________

Unique Identifier: ___________________

Age:  Under 60  60+

Gender:  Female  Male

Geographic Location:  Urban  Rural

Caregiver Relationship to Person with Dementia:

 Spouse  Unmarried partner  Child

 Other relative  Non-relative  Parent

Ethnicity of Caregiver:

______ Hispanic or Latino

______ Not Hispanic or Latino

Race of Caregiver: (Mark One or More)

 White

 American Indian/Alaska Native

 Asian

 Black/African-American

 Native Hawaiian/Other Pacific Islander

Veteran Status of Caregiver:

 Veteran

 Non-Veteran

PERSON WITH DEMENTIA

Person with Dementia – the person with diagnosed or undiagnosed Alzheimer’s disease or a related dementia. Related dementias include: Vascular Dementia, Dementia with Lewy Bodies, Frontotemporal Dementia, Parkinson’s Disease, Normal Pressure Hydrocephalus and Creutzfeldt-Jakob Disease.

Date: ______________________

Unique identifier: ___________________

Age:  Under 60  60+

Gender:  Female  Male

Geographic Location:  Urban  Rural

Ethnicity of Person with Dementia:

______ Hispanic or Latino

______ Not Hispanic or Latino

Race of Person with Dementia: (Mark One or More)

 White

 American Indian/Alaska Native

 Asian

 Black/African-American

 Native Hawaiian/Other Pacific Islander

Veteran Status of Person with Dementia:

 Veteran

 Non-Veteran

SERVICES PROVIDED:

Date: ______________________

Indicate services provided to primary caregiver or person with dementia. Units of service provided should reflect non-duplicative services provided to either member of the dyad.

Unique identifier: ____________________

Period for which services provided: _________ to _________.

Direct Services – ADSSP-Specific Service Units Provided

Adult Day Care  _______

Companion Services  _______

Home Health Care  _______

Personal Care  _______

Respite  _______

Short-term Care in Health Facility  _______

Total Direct Service Units: ___________

Attendance (for Evidence-Based Projects Only)

Unique identifier: ____________________

Date (M/D/Y): ________________ (Session 1)  Attended

Date (M/D/Y): ________________ (Session 2)  Attended

Date (M/D/Y): ________________ (Session 3)  Attended

Total Sessions Attended: _______ out of _______

Completed Intervention (circle one): Yes No

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Data Entry Date: ________________

Initials: ________________