Stress of Alzheimer’s Disease on Caregivers and the Role of Associations

1. Stress of Alzheimer’s Disease on Caregivers and the Role of Associations Social Medicine & Global Health February 21-25, 2011 Lebanese American University - Jbeil Diane Mansour President Alzheimer’s Association Lebanon

2. Sad Reality! “The curse of Alzheimer’s is that it ravages several victims for every brain it infects.” The Forgetting by David Shenk

3. Caregiver’s Stress • The stress facing caregivers is so extraordinary that it commonly leads to very serious problems on its own. • “Caregiver’s Dementia” – is not biological . • Still, this stress- induced psychological condition can be very, very serious. • One estimate has roughly half of all caregivers struggling with clinical depression.”

4. Caregiver’s Stress (cont’d) • Close friends and loved ones are forced not only to witness an excruciating fade but also increasingly to step in and compensate for lost abilities. • A person with dementia relies increasingly – and, in the fullness of time, completely – on the care of others. The caregiver! • The caregiver must preside over the degeneration of someone he or she loves very much.

5. Caregiver’s Stress (cont’d) • Must do this for years and years with the news getting worse, must negotiate impossible requests and fantastic observations. • Must put up sometimes with deranged but at the same time very personal insults; and must somehow learn to smile through it all. • The work shift in this literally thankless job lasts for twenty-four hours a day, seven days a week.

6. Symptoms of Caregiver’s Stress • Denial about the disease and its effect on the person who’s been diagnosed I know Mom is going to get better. • Grief: feeling of the loss of a companion, friend – eternal mourning. • Guilt: feeling that not enough care is being given • Anger: directed at the person, yourself, at the doctor or at the circumstance • Embarrassment: at inappropriate behavior of the person in public • Loneliness: withdrawal from society • Anxiety about facing another day and what the future holds - What happens when he needs more care than I can provide?

7. More Symptoms • Depression that begins to break your spirit and affects your ability to cope - I don’t care anymore. • Exhaustion that makes it nearly impossible to complete necessary daily tasks - I’m too tired for this. • Sleeplessness caused by a never-ending list of concerns - What if she wanders out of the house or falls and hurts herself? • Irritability that leads to moodiness and triggers negative responses and actions Leave me alone! • Lack of concentration that makes it difficult to perform familiar tasksI was so busy, I forgot we had an appointment. • Health problems that begin to take their toll, both mentally and physically - Ican’t remember the last time I felt good.

8. Caregiver’s Stress • Ignoring stress can cause the physical and mental health of caregiver’s to decline. • Too much stress can be damaging to both a caregiver and the person with Alzheimer’s. • Understanding caregiver’s emotions helps to cope with the person’s problems as well as its own.

9. Stigma and discrimination! Some people are afraid to hug somebody with dementia or even shake hands with

10. Alzheimer’s Associations • Raises Awareness. • Helps provide better quality of life to people with dementia and their families! • Gives support to caregivers. • Improves the quality of life of patients in nursing homes. • Promotes understanding among public. • Mobilizes resources for better care.

11. Alzheimer’s Association Lebanon • Was established in January 2004. • To respond to a long neglected issue in the Lebanese society. • Apply world wide expertise in the community. • Represents Lebanon in International conferences.

12. How do we help? • Provide direct services • Act as an information center • Raise public awareness

13. Provide direct services • Personalized consultations Provide personal, practical and emotional support as well as information directly to family members. • Support Group Meetings (weekly) Caring for a person with dementia can be exhausting and isolating. Sharing experiences helps improve the care given to the patient, the general well being, as well as encourages new experiences, while diminishing stigma.

14. Support Group Meeting

15. Provide direct services Cont’d • Helpline Provide counseling, reassurance and a professional listening ear, as well as give up-to-date information and advice on new methods and techniques to solve problems. • Regular meetings for caregivers (monthly) Lectures presented by doctors and other specialists, followed by Q&A sessions.

16. Provide direct services Cont’d • Provision of beds, mattresses and wheel chairs Allow Alzheimer’s patients to benefit from the best available equipment, on a renewable short term loan basis.

17. Act as an information center • Website Access to information on the disease; lists and describes the Association’s activities with up-to-date news and presentations. • Library Lending of books, in French, English and Arabic; proudly published the first book on AD in Arabic. More than 100 students from different schools & Universities researched their end of year papers at AAL premises. • Nursing homes referral Survey of current practices in assisted living facilities; training of staff in professionals homes.

18. Raise public awareness • Public Meetings Provide information to the public at large; fighting stigma and discrimination. • International participation Alzheimer’s International meetings give us direct access to a supporting network of information and research.

19. Raise public awareness • Programs & Projects Implementation of a number of programs and workshops to enhance quality of life of people with dementia.

20. Highlights • AAL became an International member of ADI in 2005 • AAL represents ADI To advocate at WHO. • AAL was invited to join the National Committee for the Elderlyin the Ministry of Social Affairs.

21. Highlights cont’d • Hosted the first international conference on Alzheimer's disease in the Arab region – March 2005 • Encourage the establishment of Alzheimer’s disease in the Arab region. • Raise awareness on Alzheimer’s disease in the Arab Region.

22. USAID grant to Alzheimer's Association Lebanon • Fully furnished and equipped the office of the Association. • Allowed the purchase of special equipment to be lent to people with dementia. • Covered the printing of the Arab version of the book "The Best Friends Approach to Alzheimer’s Care".

23. Al Waleed Bin Talal Humanitarian Foundation Workshop – 2005 - Training of nurses in nursing Homes • Assessment and evaluation of nursing homes. Introduction of occupational therapy – “use it or lose it”. • Conduct training workshops for nursing homes staff. • Enhance the quality of care in nursing homes • Encourage the establishment of day-care services in nursing homes.

24. Reaching people • Distributed 2000 copies of ‘The Best Friends Approach to Alzheimer’s Care’ free of charge • Provided equipment to more than 100 families • More than 100 students from different schools and universities researched their end of year papers at AAL.

25. Reaching people Cont’d • Provided support and guidance to more than 850 families in Lebanon. • More than 60 lectures for caregivers at the Lebanese Order of physicians. • More than 50 lectures to the general public in different areas of Lebanon. • Meeting with more than 150 families through regular support group meetings. • Conducted 5 workshops for staff in nursing homes.

26. Reaching people cont’d • Represented Lebanon in 15 International conferences. • 15 TV interviews. • Billboard Campaign.

27. Projected Programs -workshops 1. “Breaking Barriers” - Awareness Raising Program for Nursing Staff in Lebanese hospitals • - AAL has launched, so far, 6 training workshop seminars, targeting 10 hospitals throughout Lebanon • Creating harmony and understanding… • Understanding misconceptions… • Enhancing quality of care • - 300 nurses received certificates of attendance

28. Projected Programs Cont’d 2. “Capacity Building for Community Development Centers” - The objective of the program is to provide access of the less privileged part of the population to modern approaches to Alzheimer’s disease by improving the capacities, knowledge and procedural skills of health and social staff working in the Community Development Centers of the Ministry of Social Affairs. - August 1-6 @ the rate of one day seminar per area

29. Projected Programs Cont’d 3. “Dementia Prevalence in Lebanon: A nationwide study” - Alzheimer’s Association Lebanon is represented in the Steering Committee of a project on “Dementia Prevalence in Lebanon: A nationwide study”. The study is part of 10/66 Dementia Research Group, a global network of researchers who carry out population-based studies on dementia in LMIC, and is coordinated from the Institute of Psychiatry, King’s College London, UK.

30. Projected Programs Cont’d 4. Arab Conference with the Gerontology society - Preservation of the autonomy of PWD upon hospitalization

31. Projected Programs Cont’d • Reaching out! • Double the current outreach to 1500 families by 2011 – improving the lives of over 6,000 persons in Lebanon. • Provide training in all geographical areas in Lebanon. • …Longer term plans • Lay the foundation for the creation of the first Alzheimer’s specialized Nursing Home for Lebanon and the Middle East. • Host the international conference of ADI in Lebanon with representatives of over 40 countries.

32. Not to Forget those who cannot Remember Thank you

33. It is about… Making the present moment a valuable moment…. • Laughing with… • Smiling at… • Finding solutions to… • Hugging… • Kissing… • Protecting… • Happy together…

34. Laughing together…