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 Survey Methodology 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 Survey Methodology Information collected:

Patients Profile Gender % Age % 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 M.S. = 3.69 Years Years with AD (after diagnosis)

Caregivers Profile Gender % Age % Education % Caregivers: Mainly Women, 45+ years old, of middle- upper education

Caregivers Profile % Living in the same house with the patient % Get paid for caregiving 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

Results Caregivers sources of information on AD

Results Caregivers experience of living with patients Total mean scores for each statement (N=200) 3,61 3,64 3,79 4,03 4,48 4,49 4, 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 mildmoderatesevere Likert 1 to 5 % of caregivers who scored 4 or 5 on the Likert scale Likert rating scale 1 to 5 5= Totally applicable 1= Not at all applicable

Results Caregivers 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, Nursing the patient has ruined my life Nursing the patient has made me a better person, less selfish Sometimes the patient says or does things that put me in a difficult position Sometimes the patient says or does things that make me lose control Sometimes I get angry with the patient and afterwards I feel guilty Nursing the patients requires a lot of money Nursing the patient has affected me psychologically negatively mildmoderatesevere Likert 1 to 5 % of caregivers who scored 4 or 5 on the Likert scale Likert 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 % of caregivers

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

Results Patients 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 % of patients

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 % of caregivers

Results Caregivers evaluation of AD medication % 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

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

Alzheimer’s patients’ Caregivers Survey in Greece P. Sakka, E. Margioti, V. Vagenas, M. Tsolaki