Dr. Patrick Healey is a board certified full time geriatrician. Undergraduate degree from Wabash College, a Masters degree in Teaching and a Medical

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1 Dr. Patrick Healey is a board certified full time geriatrician. Undergraduate degree from Wabash College, a Masters degree in Teaching and a Medical degree from Indiana University. He completed an Internal Medicine residency at St. Vincent Hospital and a Geriatric Medicine fellowship at the University of Nottingham, England. Interests include care of the frail elderly, dementia care, nursing home care, and teaching. He is a clinical assistant professor at the IU School of Medicine, on the teaching faculty at St. Vincent Hospital, and enjoys being a speaker on educational programs regarding a wide variety of aging issues.

2 A Checklist for Caregivers of Dementia 25 th Annual Conference on Aging Patrick J Healey, MD March 14, 2014 This presenter has no financial interests to disclose.

3 Purpose Statistics relative to caregiving My biases regarding dementia care Defining the problem is medication enough? How do we improve access to resources for caregivers Prepare a checklist for families and caregivers

4 Dementia Caregiving Statistics Estimated 5.2 million persons with dementia in the US, this number will triple by ,000 in Indiana.an increase of 20% since 2000 In 2012, 15.4 million caregivers provided more than 17.5 billion hours of unpaid care valued at $216 billion 80% given by unpaid caregivers Nearly 15% of caregivers for people with Alzheimer's or another dementia are longdistance caregivers. Alzheimer s Association,

5 Dementia Caregiving Statistics In 2013, Alzheimer's cost the nation $203 billion. This number is expected to rise to $1.2 trillion by % of caregivers of family members with dementia have clinically significant depression or anxiety 2/3 of dementia pts live at home receiving care from family members

6 Dementia is often called a family disease Chronic decline affects everyone Easiest thing to say and the toughest thing to accept is advice. take care of yourself as a caregiver Dementia: You either die of it, or you die with it The long goodbye

7 My Biases No one does caregiving better than families Spouses/Daughters/daughters in law/nieces generally bear the heaviest burden Medicare is virtually no help It is not certain that everyone with dementia will need institutionalization, but the longer you live, the more likely the family will run out of resources Medications are disappointing

8 10 Steps to Begin 1. Get a medical assessment and a diagnosis 2. Lay the foundation; get a realistic view of the situation 3. Educate yourself 4. Determine your loved one s needs Personal care Household care Health care Emotional care Supervision Source: Family Caregiver Alliance.

9 10 Steps to Begin 5. Outline a care plan: a strategy for future needs 6. Look at finances 7. Review legal documents: rec. elder law attorney 8. Safety-proof your home 9. Connect with others: support group, counselling, 10. Take care of yourself: caregivers are at high risk for medical illnesses Source: Family Caregiver Alliance.

10 Medication for Dementia Would I take it if I started with mild dementia? Yes, if I were healthy On minimal medications Did not have to sacrifice anything to afford it Most importantly, zero side effects from the dementia medications Ultimately, I'd want to have a decent quality of life Thanks to:

11 Stages of Dementia FAST: Functional Assessment Staging Levels 1-4 Mild/Early Levels 5-6e Moderate (Dependency) Begins with difficulty with day to day activities, ends with double incontinence Level 7a-f Severe/Late (Motor disease) Begins with language difficulties and ends with bedridden state Reisberg, B. Psychopharmcology Bulletin, 1988; 24:

12 Early Stage Trouble remembering, not learning new things Repetitive questioning Inability to handle own affairs Withdrawal, apathy, lack of initiative Difficulty cooking Poor Judgment, vulnerable Losing things Becoming disoriented in familiar places Denial that anything is wrong

13 Early Stage: Adjusting to the New Reality Education: It s the disease, it s not him! She is not doing this on purpose The 36 Hour Day book and many others and many others Know The 10 Worrisome signs Emotional support: establish a system of support and understanding Counselling, support groups, other family members Source: Family Caregiver Alliance.

14 Early Stage: Adjusting to the New Reality Changing family roles: Maintaining prior role in the family may no longer be possible Finances: Dementia can be costly, Medicare mostly not helpful, counselling is essential, avoid swindle Legal: As early as possible tie up legal issues; POA, HCR, AD, Wills, Trusts Source: Family Caregiver Alliance.

15 Middle Stage Difficult behaviors.enormously complicated Assistance with dressing and hygiene Decline in visual-spatial abilities Lose ability to recognize friends and family Loss of reading and writing skills Requiring 24 hour supervision Possibly gait and balance problems

16 Middle Stages: Caregiving Becomes a Full Time Job Learn how to deal with challenging behaviors Emotional support Respite Care Safety Medical care: Requires active involvement of caregiver Source: Family Caregiver Alliance.

17 Middle Stages: Caregiving Becomes a Full Time Job Caregiver stress must be addressed, treat underlying depression, ensure enough care is available Over 40% of caregivers suffer from clinical depression Planning for the future: Care at home, memory care, assisted living, nursing home Source: Family Caregiver Alliance.

18 Late Stage Incontinent of bowels and bladder Verbal skills decline, lose ability to communicate Full assistance with all personal care Swallowing issues Lose ability to walk, contractures common Seizures common Weight loss Sleeps much of the time

19 Late Stage Dementia Full time caregiving required Placement Consider Skilled Nursing Facility, Assisted Living, Memory care facility Hospice/Palliative care What would she want done if she could understand what is going on? Source: Family Caregiver Alliance.

20 Conclusion Need early diagnosis and investigate available necessary resources Educate caregivers and the entire family Focus on needs of the caregivers is more important than all the medications we have Be proactive and utilize all available resources Institutions are frequently needed, but no one can do it better than the family with adequate resources

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