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Alzheimer’s patients Caregivers Survey in Greece

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.

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Alzheimer’s patients Caregivers Survey in Greece

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  1. Alzheimer’s patients Caregivers Survey in Greece • Dr Paraskevi SakkaNeuropsychiatrist • Chairwoman, Athens Association of Alzheimer’s Disease and Related DisordersHead, Neurodegenerative Brain Diseases Department, HYGEIA Hospital, Athens, Greece

  2. 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.

  3. 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.

  4. Athens Association of Alzheimer’s Disease and Related Disorders • 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

  5. Factsheet and booklet hand-out by volunteers downtown

  6. 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.

  7. Caregivers SurveyMethodology • 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 Information collected:

  8. Patients Profile Gender % Age % Patients: Mainly women 65+ years old, of low- middle education Education %

  9. Patients Profile 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. AD severity at the time of the survey AD severity at diagnosis % %

  10. Patients Profile Years with AD (after diagnosis) M.S. = 3.69 Years

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

  12. Caregivers Profile Living in the same house with the patient Get paid for caregiving % % Principale caregivers: Most of them live In the same house with the patient, are first degree relatives and thus, not paid for caregiving Relation to the patient %

  13. ResultsCaregivers sources of information on AD

  14. ResultsCaregivers experience of living with patients Total mean scores for each statement (N=200) Likert 1 to 5 82 I don't want the patient to be institutionalized 85 92 4,55 90 92 I am anxious about the disease course 88 4,49 87 93 It is my duty to make the patient feel as comfortable as can be 4,48 91 74 78 I miss the person the patient was before AD 4,03 70 92 Nursing the patient demands a lot of time 73 3,79 49 85 59 I feel bad that I can't do more for the patient 3,64 61 87 Nursing the patient defines my daily schedule 62 3,61 40 0 10 20 30 40 50 60 70 80 90 100 mild moderate severe % 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

  15. ResultsCaregivers experience of living with patients Total mean scores for each statement (N=200) 85 Likert 1 to 5 Nursing the patient has affected 55 me psychologically negatively 3,56 47 69 Nursing the patients requires a lot of money 53 3,26 28 64 Sometimes I get angry with the patient 49 and afterwards I feel guilty 3,24 39 59 Sometimes the patient says or does 45 things that make me lose control 2,98 26 59 Sometimes the patient says or does 48 things that put me in a difficult 2,96 31 position 44 Nursing the patient has made me a 37 2,76 22 better person, less selfish 38 15 2,31 Nursing the patient has ruined my life 14 0 10 20 30 40 50 60 70 80 90 mild moderate severe % 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

  16. ResultsCaregivers 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 Caregivers stating that nursing the patient has a negative psychological effect % of caregivers

  17. ResultsCaregivers 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

  18. 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 % of patients Number of total prescribed medicines received daily

  19. 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%) Caregivers stating that it is easy to ensure compliance % of caregivers Stage of AD

  20. ResultsCaregivers 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

  21. 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

  22. Caregivers Survey - Conclusions Caring for an AD patient has practical and emotional implications for the caregiver escalating as the disease progresses PRACTICAL IMPLICATIONS 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 • Requires a lot of time • Defines caregiver’s daily schedule • Has growing financial demands  Intense anxiety for the disease course in the future

  23. 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

  24. Greek Alzheimer’s Initiative Athens Association of Alzheimer’s Disease and Related Disorders www.alzheimerathens.gr

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

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