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