1 Cognitive Impairment and Dementia: What You Need to Know about Alzheimer's Disease and Related Disorders Part 2 – Clinical focus Susan Rowlett, LICSW Massachusetts and New Hampshire Chapter Image of couple dealing with Alzheimer’s embracing

2 What we will cover today 1. Assess transitions that are happening or need to happen 2. Discuss strategies to help the person with AD get the best possible care 3. Discuss strategies to preserve the health and well-being of the caregiver(s)

3 Steps to a thorough Assessment: Four Domains 1.Learn about the PERSON with memory loss 2.Learn about the individual(s) providing care 3.Learn about the person’s disease course and the family’s understanding 4.Understand formal and informal supports available in the individual’s community

4 Assessment Domain 1: The PERSON with memory loss Pre-existing personality Culture, ethnicity Strengths, interests Life history: Education, work, family role, community status Other medical issues “Age” Legal & financial considerations Spiritual background

5 Assessment Domain 2: T he individuals providing care Roles, location, availability Culture, ethnicity Family dynamics Primary caregiver: emotional and physical health at baseline and now Psychological capacity - “unable to be willing”? Comfort level as caregiver Legal & financial considerations Tolerance of risk

6 Assessment Domain 3: Disease process & level of understanding History of symptoms When diagnosed Diagnostic process Rate of progression Stage v. symptoms Person with disease: Level of insight & judgment Knowledge of the disease & capacity to learn Willingness to accept support Knowledge of system of care History of attempted interventions

7 Assessment Domain 4: Formal and informal supports Build a Team Informal supports: availability and organization Formal supports: accessibility, appropriateness History with medical and professional community Legal and financial considerations Cultural considerations

8 Path to successful transitions begins with Education Help each person gain a better understanding of the disease Provide information about good dementia care: appropriate medical and non-medical treatment and support Address the caregiver’s needs equally to the affected individual’s needs Acknowledge grief, provide education and support

9 Path to successful transitions begins with Education Empower the person with AD / caregiver(s) to take control whenever possible Practice communication techniques Identify symptom management strategies Provide tips to better understand and navigate the system of care Stress importance and identify ways to maintain the health and well-being of the caregiver

10 Transitions: Early Stage Obtaining diagnosis Driving Managing finances Change in roles in relationships Change in skills and abilities Change in personality Disclosing diagnosis

11 Transitions: Middle Stage Safety concerns – Home and community Loss of reciprocal relationship Accepting help Need for non-medical treatment increases Behavior changes – increased anxiety Incontinence Disrupted sleep

12 Transitions: Late Stage Loss of communication Shift to total care Incontinence, feeding problems, decreasing mobility Irregular sleep 24/7 nature of caregiving Preparing for end of life

13 Case Study Phase 1 Discussion

14 Case Study Phase 1 Recommendations Help the family understand the importance of the diagnosis Identify strategies to help Ellen through the diagnostic process Address Ellen’s reaction

15 Case Study Phase 2 Discussion

16 Case Study Phase 2 Recommendations Empower Ellen & her family to take control in areas where they can Discuss disclosing the diagnosis Discuss driving evaluation & alternative options Transitioning out of role in the workplace Redefining family roles

17 Case Study Phase 3 Discussion

18 Case Study Phase 3 Recommendations Help the family understand Ellen’s changing needs Identify appropriate treatment options e.g., ADHC, Companion Care, Structure Coach Richard on communication strategies Address psychiatric symptoms with appropriate evaluation and intervention

19 Case Study Phase 4 Discussion

20 Case Study Phase 4 Recommendations Revisit Ellen’s end of life wishes Facilitate discussion to address the tough questions Can she stay at home? What are the options? ALF, SNF, Homecare & Hospice Ensure appropriate emotional support is in place for the entire family

Alzheimer’s Association 24/7 Helpline Information and referral Care Consultation Support Groups Medic Alert® + Safe Return® Education Programs and Workshops Professional training

Acknowledgements This program was produced by the Alzheimer’s Association, Massachusetts and New Hampshire Chapter as part of an AoA grant Materials are excerpted from Alzheimer's Association and National Institute on Aging Alzheimer’s Disease Education and Referral (ADEAR) center

23 Alzheimer’s Association MA/NH Chapter 24/7 Helpline