Presentation on theme: "When Younger People Have Dementia: Stuart’s Story Laurie Cerqueti Jackie Sproule Judy Pateman."— Presentation transcript:
When Younger People Have Dementia: Stuart’s Story Laurie Cerqueti Jackie Sproule Judy Pateman
This is a story about….. Introduction The experience of a nursing unit during a difficult transition A family’s journey through the trajectory of dementia Tips to help promote a supportive environment
Early Onset Alzheimer’s Rare form of dementia with symptoms identified in people younger than age 65 (usually in 50’s) Estimated incidence - up to 10% of all people with Alzheimer's (Alzheimer’s Assoc. of America 2005)
Impact on Families Lack of accurate diagnosis Increased responsibilities and demands on spouse Children still at home – need extra support Spouse still in workforce Loss of support network Spouse may also have parents who require extra care Loss of intimacy Financial impact
The Announcement…. Approached by the Region to reallocate resources to create a 15 bed unit GOAL: The right person, in the right place at the right time Waited…. Finally announced in February, 2006
What did this mean? Change Staffing patterns, increased staff, but deletions & bumping, time of high uncertainty for staff = STRESS New staff, including physician Assessing which residents could transfer off unit Negotiating with families the transfer off and transition to new unit.
Upset for many families Admission of many residents from BMU that were difficult to place within the system, big change for those residents and their families. Training for staff Creation of policies relating to admission and d/c criteria, and admission agreement.
Meeting Stuart Had heard a lot about Stuart, reputation preceded him Imagined…big, over 6 feet and 200 lbs, mean look Went to visit with AB1 RN To my surprise, only 5’3” with a boyish look to him Said to the nurse…he looks younger then you!
This was the first of many trips to meet Stuart, his wife Judy, the team and chart review Planning Right time, last admission from BMU Right room, room stripped, window covering made Bed transferred
Care plan developed in collaboration with BMU staff BMU staff worked with us for several days to get Stuart settled. Every day is different, trial and error 1:1 for waking hours Difficult in a larger unit Difficult transition for Judy as had close ties with BMU due to length of time there.
Challenges for staff Younger often stronger and physically healthier, reflexes faster struggle to provide care See your own situation; could be me, my husband/wife, my brother/sister Families have a difficult time coping, staff try to support, but sometimes a challenge Increased expectations of family Residents may be mistaken as visitors and let off unit Younger residents may have different preferences i.e. music, recreation, TV, food New medications, atypical use One environment, 15 residents with different needs
Challenges for the Manager Supporting staff in dealing with difficult residents Ethical dilemmas i.e. medication, restraints Supporting families in difficult times Balancing case mix
Challenges for the Future Develop supports specifically aimed at supporting children of residents. Assist individuals to spend more time outside. Devise a discreet but effective form of identification for those at high risk of elopement. Create a smaller care environment geared specifically for younger persons with dementia. Onsite clinical psychologist for family.
Thank you Acknowledgement to AB1 staff, several in audience Difficult year Through changes and challenges has tightened the team No staffing vacancies WE made it! Thank you Judy for sharing Stuart’s story
Tips on Supporting Families HAVE EMPATHY Imagine being in their position Keep in mind families are all different with a wide range of strengths and weaknesses and react differently to stress Respect families own style of coping without judging what is right and what is wrong Encourage self care – “give permission” to take a break from visiting if exhausted and phone instead Provide hugs or a shoulder to cry on
Tips on Supporting Families BE PROACTIVE Provide written information, tours, discussions and clarify expectations during the pre-admission stage Initiate contact with family members, don’t wait for them to approach you Know that positive staff/family relationships occur when both parties perceive most of their interactions as positive Tell family about a positive experience, no matter how small! Understand that families want their loved one to be liked by the persons caring for them Understand that families tend prioritize the importance of hygiene, safety and emotional well-being over other aspects of care Be a good listener, but know how to stop conversations that are not helpful
Tips on Supporting Families HANDLE CONCERNS/COMPLAINTS APPROPRIATELY Listen to what families have to say Ask questions to clarify Express empathy, reassure – avoid defensiveness Resolve concern if possible, but don’t feel you have to have all the answers If beyond your scope, advise family of this and refer to manager for follow up
PROMOTE PARTNERSHIP Encourage families to see themselves as equal and valued members of the care team and to share ideas Try not to seem rushed – hard to do when you are busy, but will encourage positive relationships Allow families to help with care as much as they want or feel comfortable with Provide educational sessions on various topics (feeding and swallowing, progression of dementia etc.) to families as well as staff Have flexible visiting hours Tips on Supporting Families
Conclusion We hope that you will leave today with a better understanding of early on-set Alzheimer’s disease and some of the issues that both the family and other caregivers experience Poem