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Protocol - Family History of Dementia and Longevity

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Protocol Name from Source:

Family History of Dementia and Longevity 2016, Section F

Availability:

Publicly available

Description:

An interviewer-administered questionnaire that assesses medical diagnoses of an individual's mother and father as they relate to dementia and Alzheimer's Disease.

Protocol:

Questions about Mother

1. Has a doctor ever told your mother that she has Alzheimer's 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 ALZHEIMER'S 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 Alzheimer's 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 ALZHEIMER'S 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

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 "don't 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
Average time of greater than 15 minutes in an unaffected individualNo
Major equipmentNo
Specialized requirements for biospecimen collectionNo
Specialized trainingNo

Mode of Administration

Life Stage:

Adult, Senior

Specific Instructions:

These questions only apply to the biological parents.

Research Domain Information

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.

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

Process and Review

The Expert Review Panel has yet to review this measure.

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

[link[hrs.isr.umich.edu/publications/biblio?page=1&f%5Bsearch%5D=family&f%5Bauthor%5D=8007|Ostergren, J.E]]., [link[hrs.isr.umich.edu/publications/biblio?page=1&f%5Bsearch%5D=family&f%5Bauthor%5D=386|Heeringa, S.G]]., [link[hrs.isr.umich.edu/publications/biblio?page=1&f%5Bsearch%5D=family&f%5Bauthor%5D=6200|de Leon, C.F., Mendes]], [link[hrs.isr.umich.edu/publications/biblio?page=1&f%5Bsearch%5D=family&f%5Bauthor%5D=2913|Connell C.M]]., [link[hrs.isr.umich.edu/publications/biblio?page=1&f%5Bsearch%5D=family&f%5Bauthor%5D=2915|Roberts, J.S]]. (2017). [link[hrs.isr.umich.edu/publications/biblio/9144|The influence of psychosocial and cognitive factors on perceived threat of Alzheimer's Disease]]. American Journal of Alzheimer's Disease & Other Dementias. 32(5):289-299.

[link[hrs.isr.umich.edu/publications/biblio?f%5Bsearch%5D=longevity&f%5Bauthor%5D=6365|Yashin, A.I]]., [link[hrs.isr.umich.edu/publications/biblio?f%5Bsearch%5D=longevity&f%5Bauthor%5D=6361|Fang, F]]., [link[hrs.isr.umich.edu/publications/biblio?f%5Bsearch%5D=longevity&f%5Bauthor%5D=6362|Kovtun, M]]., et al. (2018). [link[hrs.isr.umich.edu/publications/biblio/9421|Hidden heterogeneity in Alzheimer's disease: Insights from genetic association studies and other analyses]]. Experimental Gerontology. 107:148-160.

Protocol ID:

250801

Variables:

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