Family Care Managers: A Community Based, Relationship Model of Care for Persons with Dementia and Their Care Partners Marge Dempsey, Alzheimer Society of Niagara Region, St. Catharines, ON, Canada
Program goals • To develop a therapeutic relationship with and maintain/enhance the quality of life of individuals with dementia and their care partners.5,6 • To provide/assist with access to information, education, support, and the necessary resources to enhance their quality of life in ways that are meaningful to them.5,6,8 • To build a strong supportive community 4,5 in partnership with individuals with dementia, their care- partners, and other health care providers/ community agencies - shared care approach that ensures coordination of service and shared resources where appropriate. • To assist/enable individuals with dementia and their care-partners to navigate the existing support system • To create opportunities for strengthening formal and informal support networks through: experience sharing; information exchange; social interaction; and peer support.8,9,10 • To provide a positive work environment of mutual respect where staff are:acknowledged, validated, supported and empowered
Partners in Care • Individuals do not experience dementia in isolation – many years from diagnosis to death • Many resources requiredas they move along the continuum of care • All encouragedto build on the strengths of the family • Clients • Adults of any age and ethno-cultural background who are experiencing symptoms of a progressive dementia of any kind • Their care-partners • Their families – including children • Program serves over 1600 individuals with dementia and their care-partners/families/year • Family Care Managers • Cohesive Interdisciplinary team of healthprofessionals (14) nursing, social work, occupational therapy • Skills and expertise in the assessment, care and support of persons with dementia, care partners, families • Community Partners • Health professionals – medicine/psychiatry • Service providers – Personal Support/Respite/legal/financial • Care Facilities
Programs and Services • Four Programs • First Link – Intake, triage and Community Liaison • Family Support – home visits, support groups, early stage programs • Intensive Case (most vulnerable) - psychiatric sequelae/behaviour • Support for those who live alone – potential risk • Developed over time an innovative community based, 2,3,4 relationship model 5,6 of care aligned with individual needs, beliefs,7 values and ethno-cultural diversity. • Advocacy is a major component • Response time is determined by priority of need • Holistic assessment • Client • Care partner - essential to the support of person with dementia • Other family members • Determine status of the individual/carepartner(s)/family • DevelopCare Plan with the individual (to the extent of their capacity) carepartner(s)/family • Re-evaluated by all and revised as appropriate on each visit
Results • The clients/families report : • improved quality of life as a result of the therapeutic relationship. • increased awareness of/access to the available resources • Over 80% of clients have at least one other community support in place e.g. day/respite program, personal support worker. • increased resilience as evidenced by an ability to cope more effectively with the day to day issues (repetitiveness, shadowing, etc.) as well as unexpected events. • improved relationships with the person with dementia. • strengthened formal and informal support networks • reduced isolation. • Staff surveys – staff job satisfaction is high 88% – we have had only 3 staff leave for another position in the 20 years of the programs operation - an average of one person every 7 years.
Conclusion • This innovative community based relationship model of family care navigation has evolved over time, based on the needs and gaps identified by persons with dementia and their care partners and families. The staff have been engaged in the role of care navigators - embracing a philosophy of relationship based care from the beginning - long before the terms were coined and the frameworks identified. • There has always been both qualitative (surveys/anecdotal) and quantitative (statistical data) evidence that the model was appropriate, effective and efficient. It is now clear, based on the current literature in all three areas, i.e. caregiver support and education,1-4 relationship based care,5,6 and care navigation,1,8-10 that our model incorporates a best practice approach for community support of persons with dementia and their care-partners/families. It embraces everything that not only maximizes the quality of life for all but also makes the journey along the continuum of care as supportive and seamless as possible.
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