When Younger People Have Dementia: Stuart’s Story

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

UnitTransition AB1

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, butknow 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

Tips on Supporting Families • 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

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

When Younger People Have Dementia: Stuart’s Story