Aging in Place - A Strategy for Caring for People with Intellectual Disability and Dementia

1. Aging in Place -A Strategy for Caring for People with Intellectual Disability and Dementia Partners in Care… Living in the Moment March 6, 2007 Leslie Udell Program Co-ordinator Winnserv Inc.

2. Degree of Commitment to Supporting Individuals • Educating Board of Directors • Development of agency policies • Recruitment and education of new board members

3. Accessible/Dementia Friendly Housing • Environmental considerations • Evaluating current housing • Considerations for people living in apartments or on their own

4. Admission and Discharge Criteria • Dealing with individual’s actions and reactions to the symptoms of Alzheimer’s disease • The impact of significant health concerns • Supporting people who have the need to wander • Supporting people who are living independently • Considerations for a death at home

5. End of Life Care Policies • Benefits and steps to planning ahead • Planned death at home • Advanced Care Directives, DNR orders • Funeral planning • Bereavement support

6. Assessment • Documentation of decline • Gradual onset and continuing cognitive decline • Atypical actions and reactions • Late onset seizure activity

7. Diagnosis and Misdiagnosis • Detailed medical history • Thorough physical and neurological exams • Psychiatric examination • Pharmacological review

8. Assessment Tools • Videotaping • Vineland Adapative Behavior Scales • Inventory for Client and Agency Planning (ICAP) • Scales of Independent Behavior • Adaptive Behavior Scale – Residential and Community

9. Specialized Dementia Scales • Dementia Scale for Down Syndrome (DSDS) -Gedye • Dementia Questionnaire for Mentally Retarded (DMR) – Evenhuis et al. • Assessment for Adults with Developmental Disabilities (A.A.D.S.) – McQuilliams, Kalsy, Oliver & Hall & • Generic Tools - Mini Mental

10. Change in Focus of Supports Provided • Maintaining skills • Stabilizing the environment • Minimizing choices • Giving reassurance • Personal care • Assessing and meetings medical needs • Meaningful activities

11. Supporting Families • Provision of information • Planning and directing care plans • End of life decisions • After the death

12. Staff Levels and Training • Appropriate levels of staffing • Dementia specific training • Maintaining and preserving skills vs. learning new skill • Pain recognition and management • Addressing concerns about reactions and actions related to the disease • End of life care, the dying process and grieving for themselves and roommates

13. Provision of Personal Care • Body mechanics • Use of equipment • Assistance for eating and drinking • Issues of incontinence

14. Support for Grieving and End of Life Care • Support teams for staff and roommates • Pastoral care for families, staff and roommates • Staff discussions around their beliefs and concerns • Families values and beliefs around death and dying • Utilizing hospice and palliative care • Arrangements for final farewells

15. Disclosure of Diagnosis • Do you tell the person that they have dementia? • Consideration of policies on disclosure • Do you tell roommates about the diagnosis?

16. Understanding the Disease • How do you explain Alzheimer’s disease to the individual and their friends and roommates? • Fostering acceptance and addressing concerns

17. Death, Dying and Grieving • Rituals • Repeated grieving • The many faces of grief