1. Social Care Issues Mary C. Hogan National Task Group on Intellectual Disabilities and Dementia Practices

2. Common Themes Fear Lack of information Isolation Struggle to access coordinated care Difficulty partnering with medical community Overwhelmed by demands of caregiving Profound sense of Loss End of life issues

3. Aging in Place “Aging in place” requires a commitment to: – On-going caregiver training – Increasing staff – Creating a calm, safe, “enabling” environment – Person centered planning – Supporting family/peers and monitoring their quality of life

4. Coordination of Care C Person Evaluation Plan Goals Assessment Reassessment Family Group Home Staff Health Care Providers Day Program Staff Model Developed by Kathleen Srsic-Stoehr, MSN, MS, RN, NEA-BC Peers Employers Community Support Services Collaboration Communication Coordination Action Strengths & Challenges 3/18/13 Version

5. Staff Challenges Dementia care is the opposite of everything staffed was trained to do…no longer about skill acquisition. Communication, coordination and collaboration in care planning-how does this happen? Day to day care Medical care Photo removed for privacy.

6. Staff Challenges Given the tools to modify the environment, staff can:  be empowered  become proactive problem solvers  avoid sense of helplessness Training related to disease process is often short term rather than on going. Care giving is a difficult job! Photo removed for privacy.

7. Staff Challenges Day programs can be too large exceed staff capacity to “care” impact quality of life be an inappropriate placement Acknowledge and support staff housemates experiencing grief and loss. Photo removed for privacy.

8. Getting startedFacial ExpressionTone of VoiceBody Language Approach from the front Smile Identify yourself Use the person’s name If possible, be at eye level Establish and maintain eye contact Be friendly and relaxed A ways remember humor: smiles and laughter go a long way Be patient and supportive Speak slowly and clearly Use a gentle & relaxed tone of voice Convey an easygoing manner Avoid sudden movement Be open and relaxed with your stance Remain calm and confident to provide reassurance Use gestures such as pointing Give visual cues National Down Syndrome Society: Aging and Down Syndrome: A Health and Well-being Guide Book

9. Maintaining Quality of Life A FLUID process requiring:  Commitment to best practices  Information sharing  Honed observation skills  The “3 C’s”  Leadership

10. “We can do better…”