10 Ways to Advocate for A Loved One s Care CYNTHIA D. FIELDS, MD 25 APRIL 2014

Transcription

1 10 Ways to Advocate for A Loved One s Care CYNTHIA D. FIELDS, MD 25 APRIL 2014

2 Find a qualified HC professional 1 Alzheimer s is a disease, so your loved one will need a doctor. for an accurate diagnosis for appropriate management Find a PCP that understands geriatrics and dementia care. someone that you trust and who returns your calls coordinates care and uses medications judiciously avoids unnecessary tests and procedures (anesthesia) Consider a specialist such as a Geriatric or Neuropsychiatrist. everyone with AD can benefit, but we are few and far between

3 Make the most of doctors visits 2 For a new doctor have medical records sent beforehand. Come prepared: list of questions and concerns notes that detail your observations medication bottles are preferable Call in-between visits and/or come in sooner for urgent matters. Call ahead with big ticket items such as driving - let the doctor be the bad guy. Keep your own medical records (various doctors, ER visits, other illnesses).

4 Educate yourself on treatments 3 There is no cure and there won t be one soon enough. Medications for AD are of modest and temporary benefit. it is often difficult to tell whether or not they are working Preventing further injury to the brain can help. control blood pressure, blood sugar, and cholesterol stay mentally active use it or lose it stay physically active may slow the rate of decline avoid alcohol and certain medications (Tylenol PM) Consider enrolling in clinical trials TrialMatch on alz.org.

5 Know the stages of AD 4 COGNITIVE decline & FUNCTIONAL decline Because memory is the primary deficit: learning new things is very difficult, if not impossible; everything that was once learned can be forgotten. Mild (Early - IADLs) Moderate (Middle - ADLs) Severe (Late) stage can use the FAST - Functional Assessment Staging (Barry Reisberg, 1984) Good days and bad days, but dementia doesn t worsen overnight. think delirium (e.g. bladder infection) and call the doctor Alzheimer s disease is a life-limiting illness that, on average, lasts 8-12 years.

6 Understand the Behaviors 5 Lower your expectations and learn not to argue. correcting and explaining are not helpful mismatch between task and ability will cause frustration Person with AD + Caregiver + Environment think unmet needs. DICE approach (Kales, Gitlin, Lyketsos in JAGS 2014): Describe the problematic behavior in detail Investigate possible causes, e.g. pain Create a treatment plan with provider(s) Evaluate whether intervention was effective Depression, anxiety, and sleep problems are common and easily treated. Aggression is not the norm: do not confront, protect yourself, call 911.

7 Take responsibility for safety now 6 Safety is the caregiver s responsibility, but enlist the doctor for help. Finances look over the checkbook Cooking check for burn marks Medications count pills Wandering account for lost time Falls get a Home Safety Evaluation Driving lessen the need for driving now Everyone with AD loses the ability to drive safely usually in the Mild stage. Continually assess the person s ability to handle an emergency if left alone.

8 Plan for the future 7 The time to make difficult health care & financial decisions is now. those windows of opportunity will close, esp. for a Will a Living Will is not enough See an Eldercare attorney ASAP. Advance directives for healthcare Power of Attorney Advance directive for finances Power of Attorney Discuss end of life care now and involve the doctor. Maryland Orders for Life Sustaining Treatment (MOLST) includes feeding tube Some people with AD require LTC placement despite our best efforts. people with dementia can thrive in the right environment

9 Devise meaningful activities 8 Daily structure and routine will make everyone s lives easier. schedule = predictability and familiarity include daily self-care and physical exercise use calendars and wipe-off boards for appointments Tap into past interests and preserved capabilities. Activities can be simple and repetitive. includes music, puzzles, photos, magazines, newspaper with coffee, coupons Watch for a decline in abilities and modify the task. Promote sleep by going to bed (and waking up) at the same time every day. avoid over-stimulation and fatigue - sundowning

10 Take good care of yourself 9 Maintain your physical health includes your own doctor visits. Watch for signs of caregiver stress and depression. caregiver depression affects the person with AD accept offers from friends and family = respite time seek professional help (medications, therapy) if needed Seek out relationships with other caregivers who have a similar experience. All caregivers lose patience at times, i.e., get rid of the guilt. It is what it is (acceptance) is a necessity. Look for moments of joy & create simple pleasures. Grief work happens early in this disease, and death is frequently a relief.

11 Use available resources 10 Every caregiver will need help this is not a one-person job. Consider Senior Centers as a joint activity. Utilize family and friends for scheduled respite time. Paid caregivers through agencies, etc., for IADLs and ADLs. Day programs (aka adult daycare) social models, not just medical. Some AL & NH facilities offer overnight respite care for up to one month. Referrals for Occupational Therapy and Physical Therapy. Geriatric Care Managers, especially if long distance caregiving. Maryland Access Point (online) is the new gateway for services.

12 Thank you. QUESTIONS OR COMMENTS?