What do caregivers think What do caregivers think about the Cognitive about the Cognitive

Performance Test as a tool Performance Test as a tool for caregiver education?for caregiver education?

Terrianne Jones, MA, OTR/LTerrianne Jones, MA, OTR/LMOTA Annual Conference MOTA Annual Conference

Oct. 26, 2012Oct. 26, 2012

Background InformationBackground Information

Incidence of Alzheimer's and Mild Cognitive Incidence of Alzheimer's and Mild Cognitive Impairment is rising .Impairment is rising .

Most persons remain in the community with the Most persons remain in the community with the support of ‘informal care’.support of ‘informal care’.

The value of unpaid ‘informal care’ was estimated to The value of unpaid ‘informal care’ was estimated to be $202 billion dollars in 2010.be $202 billion dollars in 2010.

Source: Alzheimer’s Association, 2011. Source: Alzheimer’s Association, 2011.

IssuesIssues

Delayed diagnosis Delayed diagnosis ((Bradford, Kunik, Schulz, Williams & Singh (2009)Bradford, Kunik, Schulz, Williams & Singh (2009) Refusal to seek treatment Refusal to seek treatment (Boustani et al (2006) (Boustani et al (2006)

Stress Stress (Diemling &Bass, 1986; Pinquart & Sorenson, 2003; Schulz & Martire, 2004)(Diemling &Bass, 1986; Pinquart & Sorenson, 2003; Schulz & Martire, 2004)

Belief that no help should be needed Belief that no help should be needed (Brodaty, Thomson, (Brodaty, Thomson,

Thompson & Fine, 2005) Thompson & Fine, 2005)

Lack of awareness of services Lack of awareness of services (Brodaty, Thomson, Thompson & (Brodaty, Thomson, Thompson &

Fine, 2005) Fine, 2005)

Restricted health care options and limited Restricted health care options and limited financial resources financial resources (Boustani et al,2006) (Boustani et al,2006)

Role of OT Role of OT

Over 1/3 of OTs work with persons aged 65 + Over 1/3 of OTs work with persons aged 65 + (AOTA, 2010)(AOTA, 2010)

Mostly in home care, community settings and Mostly in home care, community settings and skilled nursing facilities skilled nursing facilities (AOTA, 2010)(AOTA, 2010)

Assess: performance vs. potential Assess: performance vs. potential (Bonder, 2009)(Bonder, 2009)

Make predictions Make predictions (Burns, 2006)(Burns, 2006)

Educate clients and their caregiversEducate clients and their caregivers

AOTA AOTA Practice Guidelines for Adults with Alzheimer’s Disease Practice Guidelines for Adults with Alzheimer’s Disease and Related Disordersand Related Disorders (Schaber, 2010)(Schaber, 2010)

Services offered should revolve around assessment of :Services offered should revolve around assessment of : cognitive abilitiescognitive abilities daily habits and routinesdaily habits and routines the environmentthe environment

Caregivers can be trained to use strategies to help both Caregivers can be trained to use strategies to help both themselves and their loved ones function more effectively.themselves and their loved ones function more effectively.

A family centered care model is recommended.A family centered care model is recommended.

Literature ReviewLiterature Review

Caregivers want:Caregivers want: Specific and individualized information to Specific and individualized information to

support their relationships, to include support their relationships, to include communication issues and facilitating communication issues and facilitating engagement in day to day activities engagement in day to day activities (Turner & Street, 1999; (Turner & Street, 1999;

Yedidia & Tiedemann, 2008; Tottie, 2010).Yedidia & Tiedemann, 2008; Tottie, 2010).

Strategies to manage memory loss and difficult Strategies to manage memory loss and difficult behaviors, as well as how to manage risk behaviors, as well as how to manage risk (Turner & (Turner &

Street, 1999; Yedidia & Tiedemann, 2008; Tottie, 2010).Street, 1999; Yedidia & Tiedemann, 2008; Tottie, 2010).

More:More:

Nichols et al, 2009:Nichols et al, 2009: Management of confusion and participation in Management of confusion and participation in

activities such as drivingactivities such as driving

Rosa et al, 2010: Rosa et al, 2010: 83% of the participants reported a need to 83% of the participants reported a need to

develop more effective caregiver to patient develop more effective caregiver to patient communication.communication.

How to use non pharmacological approaches How to use non pharmacological approaches

More:More:

Qazi, Spector & Orrell, 2010Qazi, Spector & Orrell, 2010: :

Found that caregivers want person centered Found that caregivers want person centered care and education about engagement in care and education about engagement in meaningful activity as tools to help persons meaningful activity as tools to help persons with dementia feel less anxious. with dementia feel less anxious.

Barriers cited by caregivers: Barriers cited by caregivers:

Lach & Chang, 2007Lach & Chang, 2007:: Not knowing what to do and when Not knowing what to do and when Lack of access to helpLack of access to help Dissatisfaction with health professionals who were Dissatisfaction with health professionals who were

not helpfulnot helpful

Tomita et al (2010): Tomita et al (2010): the second most helpful support behind friends and the second most helpful support behind friends and

family were health care professionals.family were health care professionals. the second most unhelpful support, again behind the second most unhelpful support, again behind

family and friends, were health professionals. family and friends, were health professionals.

More barriers…More barriers…

Yedidia and Tiedmann, 2008: Yedidia and Tiedmann, 2008: Communication with professionalsCommunication with professionals Issues with communicating with the loved one Issues with communicating with the loved one

and managing their behaviors. and managing their behaviors.

Neufeld and Kushner, 2009:Neufeld and Kushner, 2009: Men especially feel ill prepared to be Men especially feel ill prepared to be

caregiverscaregivers

In Summary:In Summary:

Caregivers want not only information about Caregivers want not only information about the diagnosis from a clinical perspective, but the diagnosis from a clinical perspective, but also want practical solutions and strategies that also want practical solutions and strategies that they can use daily to support not only their they can use daily to support not only their loved one, but their own heath and wellbeing loved one, but their own heath and wellbeing as well. as well.

They do not want written materials to be the They do not want written materials to be the primary source of their information primary source of their information (Parker, Mills & Abby, (Parker, Mills & Abby,

2008).2008).

Caregiver Education: Caregiver Education:

Best practice is a multi-component approach:Best practice is a multi-component approach: Gitlin, Winter, Dennis, Hodgson, Huack Gitlin, Winter, Dennis, Hodgson, Huack

(2010):Care of Persons with Dementia in their (2010):Care of Persons with Dementia in their Environments (COPE) Environments (COPE)

Graf et al, 2007:Effects of community Graf et al, 2007:Effects of community occupational therapy on quality of life, mood, occupational therapy on quality of life, mood, and health status in dementia patients and and health status in dementia patients and their caregivers: A randomized controlled trial their caregivers: A randomized controlled trial

St. Therese StudySt. Therese Study

CPT is tool of choice for assessing cognition CPT is tool of choice for assessing cognition

Questions about the efficacy of caregiver Questions about the efficacy of caregiver education based on the CPT education based on the CPT

Participatory Action ResearchParticipatory Action Research

Role of caregivers as co-researchersRole of caregivers as co-researchers

Preliminary data from caregiver Preliminary data from caregiver interviews: interviews:

Notes:Notes:

Notes: Notes:

Notes: Notes:

Conclusions thus far:Conclusions thus far: