Background
Methods
Sample
Procedure
Measures
Instruments administered to the person with dementia
Camberwell Assessment of Need for the Elderly (CANE) [11, 12]
Mini Mental State Examination (MMSE) [15]
Quality of Life in Alzheimer's Disease (QoL-AD) [18]
Instruments administered to the carer to obtain information about the person with dementia
Neuropsychiatric Inventory (NPI) [21]
Physical Self-maintenance Scale (PSMS) and Instrumental Activities of Daily Living Scale (IADL) [23]
Practitioner Assessment of Network Typology (PANT) [4]
-
Local family dependent support network. Includes close local family ties with a few peripheral friends and neighbours. It is a small network (1-4). Older people in this network generally live very near to or in co-residence with an adult child, they are less likely to be in good health, and their community involvement is low.
-
Locally integrated support network. It is the most common and the most robust. This network is composed by local family, friends and neighbours; it is larger than average (+7) and implies high levels of community involvement. This network is related to the fewest risks.
-
Local self-contained support network. Reliance mainly on neighbours and occasional contact with at least one relative more than five miles distant. This network is average size (5-6). Community involvement, if any, is low. Risks are associated with concern for privacy.
-
Wider community focused support network. It is characterized by the absence of local kin. This network includes mainly friends living within 5 miles, some neighbours, and family living more than 50 miles away. The size of this network is larger than average (+8). Community involvement is usually high.
-
Private restricted support network. It is associated with absence of local kin other than the spouse. This network is composed by relatives who live more than 50 miles away and is smaller than average. Usually comprises two subtypes: independent married couples and older people who have withdrawn or become isolated from local involvement. It includes minimal contact with neighbours and no community involvement. Members of this network are most at risk.
Client Service Receipt Inventory (CSRI) [24]
Instruments administered to the carer to obtain information about themselves
Hospital Anxiety and Depression Scale (HADS) [25]
Zarit Burden Interview (ZBI) [29]
Data Analysis
Results
Participants
Demographics and Clinical Characteristics of People with Dementia
Characteristic | %/Mean(s.d.) | 95% CI | |
---|---|---|---|
Age (years) | 60-64 | 2.6 | |
65-79 | 42.8 | ||
80-94 | 54.6 | ||
Gender | Male | 48.7 | |
Female | 51.3 | ||
Ethnicity | White | 98.7 | |
Black | 0.7 | ||
Asian | 0.7 | ||
Marital Status | Single | 2.0 | |
Married/Living with a partner | 55.3 | ||
Separated/Divorced | 4.6 | ||
Widowed | 38.2 | ||
Living situation | Live Alone | 32.9 | |
Live with Others | 67.1 | ||
Cognitive Impairment | Severe (0-10) | 14.7% | |
Moderate (11-20) | 38.0% | ||
Mild (> 21) | 47.3% | ||
Functional Status | 6.5 (3.8) | [5.97-8.03] | |
PWD's QoL rated by themselves | 34.3 (7.0) | [33.05-36.65] | |
PWD's QoL rated by carers | 28.6 (5.7) | [27.00-30.41] | |
BPSD | 14.6 (14.7) | [10.57-18.43] |
Demographics and Clinical Characteristics of Carers
Characteristic | %/Mean(s.d.) | 95% CI | |
---|---|---|---|
Age (years) | 40-64 | 46.3 | |
65-89 | 52.8 | ||
90-100 | 0.8 | ||
Gender | Male | 28.9 | |
Female | 71.1 | ||
Marital Status | Single | 4.7 | |
Married/Living with a partner | 89.8 | ||
Separated/Divorced | 3.9 | ||
Widowed | 1.6 | ||
Carer Relationship | Spouse | 64.1 | |
Children | 30.5 | ||
Other relative | 3.9 | ||
Friend | 0.7 | ||
Co-resident Carer | Yes | 74.0 | |
No | 26.0 | ||
Depression | 6.1 (3.8) | [5.20-7.32] | |
Anxiety | 7.8 (4.6) | [6.46-9.09] | |
Burden | 33.2 (17.1) | [27.76-37.13] |
Needs
(n = 152) | Met Needs n (%) | Unmet Needs n (%) | Total Needs n (%) |
---|---|---|---|
Accommodation | 9 (5.9) | 12 (7.9) | 21 (13.8) |
Looking after home | 115 (75.7) | 13 (8.6) | 128 (84.3) |
Food | 123 (80.9) | 9 (5.9) | 132 (86.8) |
Self-Care | 82 (53.9) | 14 (9.2) | 96 (63.1) |
Caring for another | 1 (0.7) | 0 (0.0) | 1 (0.7) |
Daytime Activities | 46 (30.3) | 77 (50.7) | 123 (81.0) |
Memory | 143 (94.1) | 8 (5.3) | 151 (99.4) |
Eyesight/Hearing | 39 (26.0) | 33 (22.0) | 72 (48.0) |
Mobility | 50 (32.9) | 14 (9.2) | 64 (42.1) |
Continence | 31 (20.4) | 8 (5.3) | 39 (25.7) |
Physical Health | 96 (63.2) | 9 (5.9) | 105 (69.1) |
Drugs | 97 (63.8) | 11 (7.2) | 108 (71.0) |
Psychotic Symptoms | 14 (9.2) | 14 (9.2) | 28 (18.4) |
Psychological Distress | 30 (19.7) | 47 (30.9) | 77 (50.6) |
Information | 34 (22.4) | 12 (7.9) | 46 (30.3) |
Deliberate Self-Harm | 3 (2.0) | 8 (5.3) | 11 (7.3) |
Accidental Self-Harm | 33 (21.7) | 23 (15.1) | 56 (36.8) |
Abuse/Neglect | 11 (7.3) | 4 (2.6) | 15 (9.9) |
Behaviour | 10 (6.6) | 5 (3.3) | 15 (9.9) |
Alcohol | 3 (2.4) | 3 (2.4) | 6 (4.8) |
Company | 17(11.2) | 60 (39.5) | 77 (50.7) |
Intimate Relationships | 4 (2.6) | 12 (7.9) | 16 (10.5) |
Money | 117 (77.0) | 4 (2.6) | 121 (79.6) |
Benefits | 13 (8.6) | 1 (0.7) | 14 (9.3) |
Mean (SD) | 7.4 (2.8) | 2.6 (2.6) | 10.0 (3.3) |
Factors associated with unmet needs
People with dementia's factors | Statistic | p |
---|---|---|
Cognitive Status (MMSE) | rs = 0.10 | 0.22 |
Functional Status (ADL-IADL) | rs = 0.16 | 0.09 |
Behavioural and psychological symptoms (NPI) | rs = 0.53 | <0.01** |
QoL rated by themselves | rs = -0.15 | 0.09 |
QoL rated by carers | rs = -0.25 | <0.01** |
Carer's factors
|
Statistic
|
p
|
Depression (HADS-D) | rs = 0.15 | 0.14 |
Anxiety (HADS-A) | rs = 0.22 | <0.05* |
Burden Interview | rs = 0.09 | 0.33 |
Predictors of unmet needs
Variables (n = 95) | Beta | p |
---|---|---|
Behavioural and psychological Symptoms (NPI) | 0.41 | < 0.001 |
Grouped Social Network Type (PANT) (low vs high community involvement) | -0.33 | 0.001 |
Carer Age | -0.28 | 0.005 |
Carer Anxiety | 0.23 | 0.027 |
Variance explained by model (R
2
) %
| 51 | |
Adjusted R
2
%
| 47 | |
F =
| 15.2 | |
p
| < 0.001 | |
Variables Excluded from the Model
| Patient's marital status | |
Patient's living situation | ||
Carer's type of relationship with the patient |
Relationship between unmet needs, social networks and quality of life
Unmet Needs as Mediator between Social Network and Quality of Life rated by Carers | |||||
---|---|---|---|---|---|
Dependent variable: Quality of life rated by carers
| |||||
Regression 1
|
Independent Variable(s)
|
B
|
SE
|
t
|
p
|
Constant | 27.065 | 1.240 | 21.828 | 0.000 | |
Social network | 0.537 | 0.441 | 1.218 | 0.226 | |
Dependent variable: Unmet needs
| |||||
Regression 2
|
Independent Variable(s)
|
B
|
SE
|
t
|
p
|
Constant | 4.041 | 0.498 | 8.121 | 0.000 | |
Social network | -0.508 | 0.177 | -2.874 | 0.005 | |
Dependent variable: Quality of life rated by carers
| |||||
Regression 3
|
Independent Variable(s)
|
B
|
SE
|
t
|
p
|
Constant | 29.671 | 1.453 | 20.424 | 0.000 | |
Social network | 0.200 | 0.437 | 0.457 | 0.649 | |
Unmet needs | -0.736 | 0.235 | -3.132 | 0.002 | |
Unmet Needs as Mediator between Social Network and self-rated quality of life
| |||||
Dependent variable: Self-rated quality of life
| |||||
Regression 1
|
Independent Variable(s)
|
B
|
SE
|
t
|
p
|
Constant | 31.810 | 1.529 | 20.807 | 0.000 | |
Social network | 0.965 | 0.539 | 1.790 | 0.076 | |
Dependent variable: Unmet needs
| |||||
Regression 2
|
Independent Variable(s)
|
B
|
SE
|
t
|
p
|
Constant | 4.041 | 0.498 | 8.121 | 0.000 | |
Social network | -0.508 | 0.177 | -2.874 | 0.005 | |
Dependent variable: Self-rated quality of life
| |||||
Regression 3
|
Independent Variable(s)
|
B
|
SE
|
t
|
p
|
Constant | 33.582 | 1.842 | 18.233 | 0.000 | |
Social network | 0.767 | 0.547 | 1.403 | 0.163 | |
Unmet needs | -0.470 | 0.278 | -1.694 | 0.093 |