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Protocol - Family History of Dementia and Longevity

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Description:

An interviewer-administered questionnaire that assesses medical diagnoses of an individuals mother and father as they relate to dementia and Alzheimers Disease.

Specific Instructions:

These questions only apply to the biological parents.

Protocol:

Questions about Mother

1. Has a doctor ever told your mother that she has Alzheimers Disease?

(Medical doctors include specialists such as Neurologists, Dermatologists, Psychiatrists, Ophthalmologists, Osteopaths, Cardiologists, as well as family doctors, internists and physicians assistants. Also include diagnoses made by Nurses and Nurse Practitioners.)

1[ ]YES, GO TO Question 3

5[ ]NO

7[ ][IF VOLUNTEERED] NOT ALZHEIMERS DISEASE, GO TO Question 3

8[ ]DK

9[ ]RF

2. Has a doctor ever told your mother that she has dementia, senility or any other serious memory impairment?

1[ ]YES

5[ ]NO

8[ ]DK

9[ ]RF

3. About how old was she when she (died/passed away)?

[INTERVIEWER: PROBE IF NECESSARY]

AGE ________ (go to question 3b)

[ ] DK (go to question 4)

[ ] RF

3b. In what month and year did she (die/pass away)?

MONTH __________

[ ] DK

[ ] RF

YEAR __________

[ ] DK

[ ] RF

Questions about Father

4. Has a doctor ever told your father that he has Alzheimers Disease?

(Medical doctors include specialists such as Neurologists, Dermatologists, Psychiatrists, Ophthalmologists, Osteopaths, Cardiologists, as well as family doctors, internists and physicians assistants. Also include diagnoses made by Nurses and Nurse Practitioners.)

1[ ]YES, GO TO Question 6

5[ ]NO

7[ ][IF VOLUNTEERED] NOT ALZHEIMERS DISEASE, GO TO Question 6

8[ ]DK

9[ ]RF

5. Has a doctor ever told your father that he has dementia, senility or any other serious memory impairment?

1[ ]YES

5[ ]NO

8[ ]DK

9[ ]RF

6. About how old was he when he (died/passed away)?

[INTERVIEWER: PROBE IF NECESSARY]

AGE _____

[ ] DK

[ ] RF

6b. In what month and year did he (die/pass away)?

MONTH________

[ ] DK

[ ] RF

YEAR______

[ ] DK

[ ] RF

Protocol Name from Source:

Family History of Dementia and Longevity 2016, Section F

Availability:

Publicly available

Personnel and Training Required

The interviewer must be trained to conduct personal interviews with individuals from the general population. The interviewer must be trained and found to be competent (i.e., tested by an expert) at the completion of personal interviews. The interviewer should be trained to prompt respondents further if a "dont know" response is provided.

Equipment Needs
The PhenX Working Group acknowledges that these questions can be administered in a computerized or noncomputerized format (i.e., paper-and-pencil instrument). Computer software is necessary to develop computer-assisted instruments. The interviewer will require a laptop computer/handheld computer to administer a computer-assisted questionnaire.
Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Interviewer-administered questionnaire

Life Stage:

Adult, Senior

Participants:

Adults over 50 years of age in the United States

Selection Rationale

The Health and Retirement Study is longitudinal survey of a representative sample of Americans over 50 years of age. The study has more than 3,000 publications to date. These questions capture the important data about longevity and dementia status of the parents of an individual.

Language

English

Standards
StandardNameIDSource
Common Data Elements (CDE) Family History of Dementia and Longevity Questionnaire Assessment Score 6356787 CDE Browser
Derived Variables

None

Process and Review

Not applicable

Source

National Institute on Aging Health and Retirement Study. Family History of Dementia and Longevity 2016, Section F: Questions F233, F234, F006, F007, F008, F235, F236, F016, F017, F018.

General References

Ostergren, J.E., Heeringa, S.G., de Leon, C.F., MendesConnell C.M., Roberts, J.S. (2017). The influence of psychosocial and cognitive factors on perceived threat of Alzheimers DiseaseAmerican Journal of Alzheimers Disease & Other Dementias. 32(5):289-299.

Yashin, A.I., Fang, F., Kovtun, M., et al. (2018). Hidden heterogeneity in Alzheimers disease: Insights from genetic association studies and other analysesExperimental Gerontology. 107:148-160.

Protocol ID:

250801

Variables:
Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX250801_Father_Age_Died PX250801060102 About how old was he when he (died/passed more
away)? [IWER: PROBE IF NECESSARY] show less
N/A
PX250801_Father_Age_Died_Specific PX250801060101 About how old was he when he (died/passed more
away)? [IWER: PROBE IF NECESSARY] show less
N/A
PX250801_Father_History_Alzheimers PX250801040000 Has a doctor ever told your father that he more
has Alzheimerís Disease? DEF: (Medical doctors include specialists such as Neurologists, Dermatologists, Psychiatrists, Ophthalmologists, Osteopaths, Cardiologists, as well as family doctors, internists and physiciansí assistants. Also include diagnoses made by Nurses and Nurse Practitioners.) show less
N/A
PX250801_Father_History_Dementia PX250801050000 Has a doctor ever told your father that he more
has dementia, senility or any other serious memory impairment? DEF: (Medical doctors include specialists such as Neurologists, Dermatologists, Psychiatrists, Ophthalmologists, Osteopaths, Cardiologists, as well as family doctors, internists and physiciansí assistants. Also include diagnoses made by Nurses and Nurse Practitioners.) show less
N/A
PX250801_Father_Month_Died PX250801060202 In what month and year did he (die/pass more
away)? Month' show less
N/A
PX250801_Father_Month_Died_Specific PX250801060201 In what month and year did he (die/pass more
away)? Month show less
N/A
PX250801_Father_Year_Died PX250801060204 In what month and year did he (die/pass more
away)? Year show less
N/A
PX250801_Father_Year_Died_Specific PX250801060203 In what month and year did he (die/pass more
away)? Year show less
N/A
PX250801_Mother_Age_Died PX250801030102 About how old was she when she (died/passed away)? N/A
PX250801_Mother_Age_Died_Specific PX250801030101 About how old was she when she (died/passed more
away)? [INTERVIEWER: PROBE IF NECESSARY] show less
N/A
PX250801_Mother_History_Alzheimers PX250801010000 Has a doctor ever told your mother that she more
has Alzheimer's Disease? DEF: (Medical doctors include specialists such as Neurologists, Dermatologists, Psychiatrists, Ophthalmologists, Osteopaths, Cardiologists, as well as family doctors, internists and physicians assistants. Also include diagnoses made by Nurses and Nurse Practitioners.) show less
N/A
PX250801_Mother_History_Dementia PX250801020000 Has a doctor ever told your mother that she more
has dementia, senility or any other serious memory impairment? DEF: (Medical doctors include specialists such as Neurologists, Dermatologists, Psychiatrists, Ophthalmologists, Osteopaths, Cardiologists, as well as family doctors, internists and physiciansí assistants. Also include diagnoses made by Nurses and Nurse Practitioners.) show less
N/A
PX250801_Mother_Month_Died PX250801030202 In what month and year did she (die/pass more
away)? Month show less
N/A
PX250801_Mother_Month_Died_Specific PX250801030201 In what month and year did she (die/pass more
away)? Month show less
N/A
PX250801_Mother_Year_Died PX250801030204 In what month and year did she (die/pass more
away)? Year show less
N/A
PX250801_Mother_Year_Died_Specific PX250801030203 In what month and year did she (die/pass more
away)? Year show less
N/A
Geriatrics
Measure Name:

Family History of Dementia and Longevity

Release Date:

July 2, 2018

Definition

Questionnaire obtaining history of diagnosis of dementia and Alzheimer's Disease in an individual's mother and father.

Purpose

Both dementia and longevity exhibit some degree of heritability, so information on maternal and paternal history is important to an individual.

Keywords

Alzheimer's Disease, Dementia, Memory Impairment, Senility, Health and Retirement Study, National Institute on Aging, NIA, gerontology, aging