Alzheimer’s patients Caregivers
Survey in Greece
Dr Paraskevi Sakka
Neuropsychiatrist
Chairwoman, Athens Association of Alzheimer’s Disease and Related Disorders
Head, Neurodegenerative Brain Diseases Department, HYGEIA Hospital, Athens, Greece
Caregivers Survey
In July 2008, Alzheimer’s Associations in Athens and Thessaloniki conducted a survey among caregivers of Alzheimer’s patients which was supported by a pharmaceutical company
Aims: To record caregivers stance towards caring and their opinion on current status of Dementia treatment in Greece.
Athens Association of Alzheimer’s Disease and Related Disorders
Non-profit organization founded in 2002 by dementia patients, carers and health professionals interested in Alzheimer’s
disease.
Aiming at providing care and support for everyone, in anyway related to the
disease.
2 Day Care Centers• Memory clinic • Neuropsychological assessment • Cognitive training • Speech and occupational therapy• Liaising with the community
Activities:
• Training and support for carers
• Information and prevention programs for the public
• Training for Health Care Professionals
Athens Association of Alzheimer’s Disease and Related Disorders
Factsheet and booklet hand-out by volunteers downtown
Caregivers SurveyMethodology
• Face to face interviews with 200 caregivers were performed by clinical psychologists.
• A 37 item questionnaire was used for the interviews.
• A 4 or 5-point Likert scale was used to record opinions impossible to express with a ‘yes’ or ‘no’ answer.
•Patients demographics
•Caregivers demographics and relation to the patient
•Impact on caregivers life
•Caregivers level of knowledge on AD
•Treatment history – treatment compliance - evaluation of treatment efficacy
Caregivers SurveyMethodology
Information collected:
Patients Profile
5743
Women Men
Gender%
1 7
4250
45-54 55-64 65-74 76+
Age
%
4529 26
Low Middle Upper
Education
%Patients:
Mainly women 65+ years old, of low- middle education
Patients Profile
AD severity at diagnosis AD severity at the time of the survey
For most patients, diagnosis was made when the disease was still at a mild stage.At the time of the survey a lot had progressively moved to more severe stages.
% %
Patients Profile
313
21 2112 11
20
Less than 1year
1 year 2 years 3 years 4 years 5 years 6 + years
M.S. = 3.69 Years
Years with AD (after diagnosis)
Caregivers Profile
71
29
Women Men
Gender%
1 7 1226
15
39
18-24 25-34 35-44 45-54 55-64 65+
Age%
2441 35
Low Middle Upper
Education
%Caregivers:
Mainly Women, 45+ years old, of middle- upper education
80
20
Yes No
Caregivers Profile
%
Living in the same house with the patient
10
90
Yes No
%
Get paid for caregiving
4937
2 6 7
Husband/ Wife/Companion
Parent Grandparent Other relative Other
Relation to the patient
%Principale caregivers:
Most of them live In the same house
with the patient, are first degree relatives
and thus, not paid for caregiving
2
6
19
34
35
51
52
44
60
Seminars/ Conferences
Alzheimer Association
Internet
Friends & Relatives
Books
TV/ Radio programs
Magazines/ Newspapers articles
Other doctor/ specialist/ psychologist
Patient's Doctor
ResultsCaregivers sources of information on AD
ResultsCaregivers experience of living with
patientsTotal mean scores for
each statement (N=200)
3,61
3,64
3,79
4,03
4,48
4,49
4,55
40
61
49
70
91
88
92
62
59
73
78
93
92
85
87
85
92
74
87
90
82
0 10 20 30 40 50 60 70 80 90 100
Nursing the patient defines my daily schedule
I feel bad that I can't do more for the patient
Nursing the patient demands a lot of time
I miss the person the patient was before AD
It is my duty to make the patient feel as comfortable as can be
I am anxious about the disease course
I don't want the patient to be institutionalized
mild moderate severe
Likert 1 to 5
% of caregivers who scored 4 or 5 on the Likert scaleLikert rating scale 1 to 5
5= Totally applicable
1= Not at all applicable
ResultsCaregivers experience of living with
patients
Total mean scores for each statement (N=200)
2,31
2,76
2,96
2,98
3,24
3,26
3,56
14
22
31
26
39
28
47
15
37
48
45
49
53
55
38
44
59
59
64
69
85
0 10 20 30 40 50 60 70 80 90
Nursing the patient has ruined my life
Nursing the patient has made me abetter person, less selfish
Sometimes the patient says or doesthings that put me in a difficult
position
Sometimes the patient says or doesthings that make me lose control
Sometimes I get angry with the patientand afterwards I feel guilty
Nursing the patients requires a lot of money
Nursing the patient has affectedme psychologically negatively
mild moderate severe
Likert 1 to 5
% of caregivers who scored 4 or 5 on the Likert scaleLikert rating scale 1 to 5
5= Totally applicable
1= Not at all applicable
Caregivers stating that nursing the patient has a negative psychological effect
Results Caregivers burden
• The vast majority of caregivers report that nursing an AD patient has escalating negative psychological implications as the disease progresses. Main reported feelings are:
-Sorrow-Frustration-Anger
0
10
20
30
40
50
60
70
80
90
Mild AD Moderate AD Severe AD Total
4755
85
57
% o
f c a
reg
ivers
Results Caregivers thoughts about the
future • More than 80%
of caregivers do not wish patients admittance in nursing homes
- 92% of those nursing mild AD patients
- 85% of those nursing moderate AD patients
- 82% of those nursing severe AD patients
92
85
82
88
76 78 80 82 84 86 88 90 92 94
Mild AD
Moderate AD
Severe AD
Total
ResultsPatients medication
• Patients take on average 4 medicines per day (to treat AD and comorbidities)
• The majority has a different schedule for every medicine
• This is characterized as at least ‘somehow inconvenient’ by 63% of caregivers
Mean=4.12
Number of total prescribed medicines received daily
% o
f p
ati
en
t s
Caregivers stating that it is easy to ensure
compliance
Results Compliance with medication
• On average, patients have been for 3.45 years on AD medication
• On average, 1-2 different AD medication have been tried since diagnosis
• Caregivers of patients with severe AD reported more difficulties with medication compliance and adherence to dosage schedule
• Mainly due to patients refusal to cooperate (76%) Stage of AD
% o
f ca
reg
ivers
ResultsCaregivers evaluation of AD medication
70
14
72
59
30
73
31
36
59
0 10 20 30 40 50 60 70 80
It slows down the progressthe disease progress
It keeps the patient calm
Without this medication,patient's condition would be
worse
mild moderate severe
% of caregivers who scored 4 or 5 on the Likert scale
Likert rating scale 1 to 5
5= It perfectly describes the specific medication
1= It does not describe at all the specific medication
Total mean scores for each statement (N=200)
3,51
2,32
4,01
Caregivers Survey - Conclusions • Caregivers of AD patients are mainly women, 45+ years old, of
middle to upper education
• Most of them are first degree relatives, living with the patient and not paid for caregiving
• The key source of information regarding AD are health professionals
• On average, patients receive 4 prescribed medicines in total. Most have tried 1-2 AD medicines since diagnosis.
• Caregivers seem to be rather skeptical about AD treatment effectiveness
Caregivers Survey - Conclusions
Caring for an AD patient has practical and emotional implications for the caregiver
escalating as the disease progresses
PRACTICAL IMPLICATIONS
Requires a lot of time Defines caregiver’s daily schedule Has growing financial demands
EMOTIONAL IMPLICATIONS
Caregivers feel responsible for the patient
It is hard for them to see the patient in this condition and they miss the person the patient was before AD
Nursing an AD patient has increasing negative psychological implications: sorrow, frustration, anger
Intense anxiety for the disease course in the future
Caregivers Survey - Conclusions
There is an urgent need to recognize the significant practical and emotional burden of AD patients
caregivers and support the development of respite
services in Greece
Greek Alzheimer’s
Initiative
Athens Association of Alzheimer’s Disease and
Related Disorders
www.alzheimerathens.gr
Alzheimer’s patients’ Caregivers Survey in Greece
P. Sakka, E. Margioti, V. Vagenas, M. Tsolaki
Top Related