Leslie Udell Program Co-ordinator Winnserv Inc. 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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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