What do caregivers think about the Cognitive Performance Test as a tool for caregiver education? Terrianne Jones, MA, OTR/L MOTA Annual Conference Oct. 26, 2012

Background Information Incidence of Alzheimer's and Mild Cognitive Impairment is rising. Incidence of Alzheimer's and Mild Cognitive Impairment is rising. Most persons remain in the community with the support of ‘informal care’. Most persons remain in the community with the support of ‘informal care’. The value of unpaid ‘informal care’ was estimated to be $202 billion dollars in The value of unpaid ‘informal care’ was estimated to be $202 billion dollars in Source: Alzheimer’s Association, 2011.

Issues Delayed diagnosis ( Bradford, Kunik, Schulz, Williams & Singh (2009) Delayed diagnosis ( Bradford, Kunik, Schulz, Williams & Singh (2009) Refusal to seek treatment (Boustani et al (2006) Refusal to seek treatment (Boustani et al (2006) Stress (Diemling &Bass, 1986; Pinquart & Sorenson, 2003; Schulz & Martire, 2004) Stress (Diemling &Bass, 1986; Pinquart & Sorenson, 2003; Schulz & Martire, 2004) Belief that no help should be needed (Brodaty, Thomson, Thompson & Fine, 2005) Belief that no help should be needed (Brodaty, Thomson, Thompson & Fine, 2005) Lack of awareness of services (Brodaty, Thomson, Thompson & Fine, 2005) Lack of awareness of services (Brodaty, Thomson, Thompson & Fine, 2005) Restricted health care options and limited financial resources (Boustani et al,2006) Restricted health care options and limited financial resources (Boustani et al,2006)

Role of OT Over 1/3 of OTs work with persons aged 65 + (AOTA, 2010) Over 1/3 of OTs work with persons aged 65 + (AOTA, 2010) Mostly in home care, community settings and skilled nursing facilities (AOTA, 2010) Mostly in home care, community settings and skilled nursing facilities (AOTA, 2010) Assess: performance vs. potential (Bonder, 2009) Assess: performance vs. potential (Bonder, 2009) Make predictions (Burns, 2006) Make predictions (Burns, 2006) Educate clients and their caregivers Educate clients and their caregivers

AOTA Practice Guidelines for Adults with Alzheimer’s Disease and Related Disorders (Schaber, 2010) Services offered should revolve around assessment of : Services offered should revolve around assessment of : cognitive abilities cognitive abilities daily habits and routines daily habits and routines the environment the environment Caregivers can be trained to use strategies to help both themselves and their loved ones function more effectively. Caregivers can be trained to use strategies to help both themselves and their loved ones function more effectively. A family centered care model is recommended. A family centered care model is recommended.

Literature Review Caregivers want: Specific and individualized information to support their relationships, to include communication issues and facilitating engagement in day to day activities (Turner & Street, 1999; Yedidia & Tiedemann, 2008; Tottie, 2010). Specific and individualized information to support their relationships, to include communication issues and facilitating engagement in day to day activities (Turner & Street, 1999; Yedidia & Tiedemann, 2008; Tottie, 2010). Strategies to manage memory loss and difficult behaviors, as well as how to manage risk (Turner & Street, 1999; Yedidia & Tiedemann, 2008; Tottie, 2010). Strategies to manage memory loss and difficult behaviors, as well as how to manage risk (Turner & Street, 1999; Yedidia & Tiedemann, 2008; Tottie, 2010).

More: Nichols et al, 2009: Management of confusion and participation in activities such as driving Management of confusion and participation in activities such as driving Rosa et al, 2010: 83% of the participants reported a need to develop more effective caregiver to patient communication. 83% of the participants reported a need to develop more effective caregiver to patient communication. How to use non pharmacological approaches How to use non pharmacological approaches

More: Qazi, Spector & Orrell, 2010: Found that caregivers want person centered care and education about engagement in meaningful activity as tools to help persons with dementia feel less anxious. Found that caregivers want person centered care and education about engagement in meaningful activity as tools to help persons with dementia feel less anxious.

Barriers cited by caregivers: Lach & Chang, 2007: Not knowing what to do and when Not knowing what to do and when Lack of access to help Lack of access to help Dissatisfaction with health professionals who were not helpful Dissatisfaction with health professionals who were not helpful Tomita et al (2010): the second most helpful support behind friends and family were health care professionals. the second most helpful support behind friends and family were health care professionals. the second most unhelpful support, again behind family and friends, were health professionals. the second most unhelpful support, again behind family and friends, were health professionals.

More barriers… Yedidia and Tiedmann, 2008: Communication with professionals Communication with professionals Issues with communicating with the loved one and managing their behaviors. Issues with communicating with the loved one and managing their behaviors. Neufeld and Kushner, 2009: Men especially feel ill prepared to be caregivers Men especially feel ill prepared to be caregivers

In Summary: Caregivers want not only information about the diagnosis from a clinical perspective, but also want practical solutions and strategies that they can use daily to support not only their loved one, but their own heath and wellbeing as well. Caregivers want not only information about the diagnosis from a clinical perspective, but also want practical solutions and strategies that they can use daily to support not only their loved one, but their own heath and wellbeing as well. They do not want written materials to be the primary source of their information (Parker, Mills & Abby, 2008). They do not want written materials to be the primary source of their information (Parker, Mills & Abby, 2008).

Caregiver Education: Best practice is a multi-component approach: Gitlin, Winter, Dennis, Hodgson, Huack (2010):Care of Persons with Dementia in their Environments (COPE) Gitlin, Winter, Dennis, Hodgson, Huack (2010):Care of Persons with Dementia in their Environments (COPE) Graf et al, 2007:Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: A randomized controlled trial Graf et al, 2007:Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: A randomized controlled trial

St. Therese Study CPT is tool of choice for assessing cognition CPT is tool of choice for assessing cognition Questions about the efficacy of caregiver education based on the CPT Questions about the efficacy of caregiver education based on the CPT Participatory Action Research Participatory Action Research Role of caregivers as co-researchers Role of caregivers as co-researchers

Preliminary data from caregiver interviews:

Notes:

Notes:

Notes:

Conclusions thus far: