Background
Methods
Sample and design
Dementia diagnosis
Assessment of socio-demographic and functional ability
Questionnaire mapping and development
DEMQOL domain | Item in the CC75C study |
---|---|
Daily activities1
| |
-getting around | NA |
-keeping yourself clean | NA |
-keeping yourself looking nice | NA |
-going to the toilet | NA |
-using knife and fork | NA |
-getting the things you need from the shops | NA |
-getting in touch with people when you need to | NA |
-getting meals | NA |
-taking care of the house | NA |
-getting where you need to go | NA |
-taking care of your finances | NA |
-using money to buy everyday things | NA |
-choice about how to spend your time | No |
-things that you want to do but you can’t | No |
-being able to enjoy what you do | The things I do are as interesting to me as they ever were |
Have you lost pleasure or interest in doing things you usually cared about or enjoyed? | |
Cognitive functioning1
| |
-memory for recent events | NA |
-memory for names | NA |
-concentration | NA |
-orientation in time, place and person | NA |
-clarity of thought | NA |
-making your mind up | NA |
-communication | NA |
Self-concept | |
-self-esteem | No |
-presentation of self | No |
-sense of independence | No |
-satisfaction with past life | No |
-satisfaction with present life | No |
-hopes and aspirations for the future | How do you feel about the future? |
-feeling useful | No |
Health and well-being | |
-global health rating | How would you rate your physical health compared to a year ago? |
-happiness-depression | I am just as happy as when I was younger |
-contentment-frustration | No |
-enjoying life-enjoying nothing | Would you say that you enjoy your life? |
-confidence | No |
-embarrassment | No |
-anxiety | Do you feel more tense and worry more than usual about little things? |
-lively-weary | Would you say you have more or less energy at the moment than you did a year ago?
|
-loneliness | Do you feel lonely? |
-somatic complaints | Have you had more trouble sleeping recently than is normal for you? |
Have you lost (or gained) a lot of weight in the last six months? | |
-feeling safe | No |
-cheerful | No |
-relaxed | No |
-irritable | Have you felt more irritable lately? |
-angry | No |
-resentful | No |
-sad | Do you feel sad or depressed or miserable? |
-distressed | No |
Social relationships | |
-treatment by others | No |
-social interaction | No |
-reciprocity | Is there anyone whom you help with anything? |
-social integration | No |
-companionship | No |
-social support | There are members of my family (friends) who can be relied on no matter what happens |
-intimacy and physical affection | In general, do you have as much contact with family and friends as you would like to? |
-other emotional relationships | No |
Analysis
Ethics approval and consent
Results
Description of sample
Sociodemographic and health status variables by sex | Men (n = 40) | Women (n = 70) | Total (n = 110) | |||
---|---|---|---|---|---|---|
n | % | n | % | n | % | |
Age | ||||||
Mean (SD) | 86.6 | 4.0 | 86.2 | 3.4 | 86.6 | 3.6 |
Range | 81 | 96 | 81 | 96 | 81 | 96 |
81–84 | 19 | 47.5 | 30 | 42.9 | 49 | 44.5 |
85–89 | 14 | 35.0 | 32 | 45.7 | 46 | 41.5 |
90+ | 7 | 17.5 | 8 | 11.4 | 15 | 13.6 |
Education | ||||||
Left school <15 years old | 29 | 72.5 | 49 | 70.0 | 78 | 70.9 |
Left school ≥15 years old | 11 | 27.5 | 21 | 30.0 | 32 | 29.1 |
Accommodation | ||||||
House/flat/granny flat | 28 | 70.0 | 50 | 71.4 | 78 | 70.9 |
Warden controlled/sheltered housing | 7 | 17.5 | 11 | 15.7 | 18 | 16.4 |
Residential home | 4 | 10.0 | 9 | 12.9 | 13 | 11.8 |
Long stay hospital | 1 | 2.5 | 0 | 0.0 | 1 | 0.9 |
Marital status | ||||||
Married | 16 | 40.0 | 10 | 14.3 | 26 | 23.6 |
Widowed | 20 | 50.0 | 54 | 77.1 | 74 | 67.3 |
Separated/divorced | 0 | 0.0 | 1 | 1.4 | 1 | 0.9 |
Never married | 4 | 10.0 | 5 | 7.1 | 9 | 8.2 |
Disability | ||||||
No ADL or IADL | 13 | 32.5 | 22 | 31.4 | 35 | 31.8 |
IADL only | 18 | 45.0 | 16 | 22.9 | 34 | 30.9 |
ADL + IADL | 9 | 22.5 | 31 | 44.3 | 40 | 36.4 |
Missing | 0 | 0.0 | 1 | 1.4 | 1 | 0.9 |
MMSE | ||||||
Mean (SD) | 22.0 | 4.7 | 20.9 | 4.8 | 21.3 | 4.8 |
Range | 13 | 30 | 11 | 29 | 11 | 30 |
Moderate | 14 | 35.0 | 30 | 42.9 | 44 | 40.0 |
Mild | 26 | 65.0 | 40 | 57.1 | 66 | 60.0 |
Self-rated health | ||||||
Very good/good | 34 | 85.0 | 52 | 74.3 | 86 | 78.2 |
Fair/very poor | 4 | 10.0 | 10 | 14.3 | 14 | 12.7 |
Missing | 2 | 4.7 | 8 | 10.8 | 10 | 8.6 |
Dementia type | ||||||
Alzheimer’s Disease (AD) | 30 | 75.0 | 46 | 65.7 | 76 | 69.9 |
Vascular Dementia (VD) | 1 | 2.5 | 3 | 4.3 | 4 | 3.6 |
Mixed (AD + VD) | 7 | 17.5 | 18 | 25.7 | 25 | 22.7 |
Dementia secondary to other causes | 1 | 2.5 | 1 | 1.4 | 2 | 1.8 |
Clouded/delirious state + AD | 0 | 0.0 | 2 | 2.9 | 2 | 1.8 |
Clouded/delirious state + VD | 1 | 2.5 | 0 | 0.0 | 1 | 0.9 |
Results from mapping
Psychometric evaluation
Psychometric property | Statistic | p value |
---|---|---|
Acceptability
| ||
% missing (summary score) | 2.73% | |
Skewness
| ||
Shapiro-Wilk
|
<0.05
| |
Skewness test
|
0.056
| |
Shapiro-Francia
|
<0.05
| |
Reliability
| ||
Internal consistency (alpha) | 0.73 | |
Validity
| ||
Convergent (Spearman rho) | ||
MMSE | 0.059 | 0.55 |
Disability | -0.08 | 0.40 |
Discriminant | ||
Age | -0.048 | 0.62 |
Known groups | ||
Sex (z) | 1.958 | 0.05 |
Education (z) | 0.751 | 0.45 |
Marital status (χ2) | 2.989 | 0.39 |
Self perceived health (z) | -2.428 | 0.02 |
Factor analysis | 1 factor solution | 22% variance |
Distribution of HRQL by socio-demographic and functional variables
Distribution of HRQL | Women | Men | Total |
---|---|---|---|
Age | Median & interquartile difference | Median & interquartile difference | Median & interquartile difference |
81–84 | 14 | 11 | 12 |
4 | 4 | 5 | |
85–89 | 14 | 11 | 11 |
5 | 6 | 5 | |
90+ | 11 | 12 | 11 |
8 | 5 | 3 | |
Sex | |||
Men | - | - | 13 |
4 | |||
Women | - | - | 11 |
6 | |||
Education | |||
Left school <15 years old | 13 | 11 | 12 |
4 | 4 | 5 | |
Left school ≥15 years old | 13 | 11 | 12 |
4 | 7 | 6 | |
Accommodation | |||
House/flat | 13 | 11 | 12 |
4 | 5 | 5 | |
Warden controlled | 13 | 12 | 13 |
7 | 5 | 5 | |
Residential home | 12 | 13 | 13 |
2 | 6 | 5 | |
Long stay hospital | 3 | - | 3 |
0 | - | 0 | |
Marital status | |||
Married | 14 | 10 | 13 |
2 | 5 | 3 | |
Widowed | 12 | 11 | 11 |
7 | 5 | 6 | |
Separated/divorced | - | 11 | 11 |
- | 0 | 0 | |
Never married | 13 | 13 | 13 |
5 | 1 | 2 | |
Disability | |||
No ADL or IADL | 12 | 12 | 12 |
4 | 5 | 5 | |
IADL only | 14 | 11 | 13 |
4 | 2 | 5 | |
ADL + IADL | 12 | 11 | 11 |
2 | 5 | 5 | |
MMSE | |||
Moderate | 13 | 12 | 12 |
5 | 4 | 5 | |
Mild | 13 | 11 | 12 |
4 | 6 | 5 | |
Self-rated health | |||
Very good/good | 13 | 12 | 13 |
4 | 5 | 5 | |
Fair/poor | 11 | 8 | 9 |
8 | 5 | 4 |
Distribution of HRQL | Moderate dementia | Mild dementia |
---|---|---|
Age | Median & interquartile difference | Median & interquartile difference |
81–84 | 12 | 13 |
5 | 5 | |
85–89 | 12 | 11 |
6 | 5 | |
90+ | 12 | 11 |
5 | 3 | |
Sex | ||
Men | 13 | 13 |
5 | 4 | |
Women | 12 | 11 |
4 | 6 | |
Education | ||
Left school <15 years old | 12 | 11 |
6 | 5 | |
Left school ≥15 years old | 7 | 13 |
9 | 6 | |
Accommodation | ||
House/flat | 11 | 12 |
5 | 5 | |
Warden controlled | 13 | 11 |
2 | 9 | |
Residential home | 13 | 11 |
3 | 5 | |
Long stay hospital | 3 | - |
0 | - | |
Marital status | ||
Married | 13 | 13 |
4 | 3 | |
Widowed | 12 | 11 |
6 | 6 | |
Separated/divorced | 11 | - |
0 | - | |
Never married | 13 | 13 |
4 | 3 | |
Disability | ||
No ADL or IADL | 10 | 12 |
7 | 5 | |
IADL only | 13 | 12 |
4 | 6 | |
ADL + IADL | 12 | 11 |
6 | 6 | |
Self-rated health | ||
Very good/good | 13 | 13 |
6 | 4 | |
Fair/poor | 10 | 8 |
6 | 9 |