Why should PCP’s Focus on Resources for Dementia Carers to Improve Your Dementia Patients’ Quality of Life

1. The carer’s quality of life IS correlated with the quality of life for the dementia patient.1

2. Supporting carers through psychoeducational interventions/referrals generally leads to positive outcomes for carers and delays institutionalization of care recipients.8

3. PCP’s commonly agree that older patients with dementia are more difficult to manage than older patients with heart disease or diabetes mellitus. Why?

a. Unlike many of these other common conditions, optimal dementia management is highly dependent on accessing social services for behavior management, respite care, and other community resources. These prominent components of recommendations are found in multiple practice guidelines.

b. Thus, an opportunity exists for you to improve your ability to manage your patient’s dementia care by improving your knowledge and ability to refer and utilize dementia-related resources.9

Efficient/effective conversation strategies

A. Start with ways to communicate and work together with dementia carer.

1. Establish a partnership with the caregiver2

a. See the caregiver as a member of the care team.i. Ask what the caregiver wants to know

ii. Answer all questions as time allows (use agenda setting strategies) 2. Discuss the PCP’s responsibilities to the dementia carer and care recipient2

a. Caregivers report less depression when they communicate well with providers and when their role is respected10

b. Use language that is clear and understandable to the caregiverc. Use empathic listening - The caregiver will know they are being heardd. Ask about the caregivers’ needs

3. Engage other primary care team members to enhance communication with carera. Obtain information about caregiver stressb. Coordinate referrals, provide additional caregiver education, and follow-up as appropriate

B. Focus on the needs of dementia carers for those 65 years and older11

1. Identify the dementia carer’s needs. Possible needs may include: a. Education about specific skills/tasksb. Stress reduction strategies c. Realistic goal settingd. The carer’s own health and self-caree. Permission and Encouragement in how to ask for help from others (and how to be prepared for

hesitancy/refusal)2. Print and Share the attached “Addressing the Needs of the Caregivers document with caregivers.

Addressing Dementia Carers’ Struggles through Conversation/Referral to Resources 3

The next step is to link the dementia carer’s needs and struggles with resources. Here are some examples:

EXAMPLES OF DEMENTIA CARER’S STRUGGLE3 RESOURCE/REFERRAL TO:o Duration of Care: Dementia carers provide care for a

longer period compared with carers of older adults with other chronic conditions. Many questions may arise, including: what should caregivers expect? What is their role, care options, and important tasks by disease stage? How can a caregiver take care of themselves?

þ Understanding Caregiving by Stage (alz.org)o Early-Stage o Middle-Stage o Late Stage

þ Refer to Taking Care of You: Self-Care for Family Caregivers) which outlines 8 Tools/Strategies

þ Caregiving task help (e.g., bathing, preparing meals)

þ Respite Careo Stress/Depression/Impaired Health: 30 to 40% of

family caregivers suffer from depression; women may experience higher levels of burden, depression, and impaired health than their male counterparts.

þ Carer Support Groupsþ PCP appointment for Carerþ Alzheimer Association 24/7 Hotline:

1.800.272.3900þ Take Caregiver Stress 8 Item Quiz with

direct links to appropriate resourcesþ Refer Carer to Taking Care of You: Self-Care

for Family Caregiverso Competence: 50% of dementia carers report no

experience with medical/nursing-related tasks (e.g., injections, tube feedings, catheter care, ostomy care, repositioning) and they lack the information and resources to manage complex medication regimens.

þ Training Guides, Trainersþ Seek appointment with social worker or

other health care professional to set up home care if unable to manage task

o Isolation: Sensing that the PCP cares for the patient only (co-morbidities, meds, safety issues) and is insensitive to caregiver burden

þ Treat as Dyad: When patients and carers

are treated as a dyad, outcomes for both are improved 5

o Lack of Physician Provided Education on dementia disease management and health behavior changes AND lack of referrals to additional sources for support within a 12-month period.

þ Quality Metric: CMS’s Physician Quality Reporting System (PQRS) includes Measure 2884

þ Percentage of patients, regardless of age, with a diagnosis of dementia whose caregiver(s) were provided with education on dementia disease management and health behavior changes AND referrals for support were offered.

Who has these resources? Utilize the Geriatric Fast Fact on Dementia Caregiver FAQs Link to have a mobile up to date list of the references below and to share with your clinical team.Alzheimer’s Association (www.alz.org)o 24/7 Hotline 1.800.272.3900 is available for free

support whenever patients or caregivers need ito Provides referrals to local program and serviceso Callers who are in crisis are triaged to a free,

confidential care consultant provided by master’s level clinicians

o 24/7 Helpline has language translation serviceLocal chapterso SE WI - Milwaukee https://www.alz.org/sewi/o https://www.alz.org/scwisc/ o Greater Wisconsin - DePere

https://www.alz.org/gwwi/o Southcentral Wisconsin – Madison

https://www.alz.org/care/overview.aspCaregiver Centero Care Training Resourceso Education Programso Support Groups, On-Line Forums, Weekly

NewsletterAARP Home Alone Alliance https://www.aarp.org/ppi/initiatives/home-alone-alliance.htmlo Focused on providing family caregiver training for

medical/nursing taskso Developed by prestigious and growing

consortiumo Videos and tools are typically available in Spanish

and English and average 15 min in lengtho Topics Include: Managing Meds (e.g., eye drops,

patches, suppositories, oral meds), Mobility (what to do when someone falls, transferring from a walker to shower/bed), Wound Care (care of skin tears, pressure ulcers, ostomy bags)

Family Caregiver Alliance www.caregiver.orgo FCA CareJourney – information, support, and

resources for family caregivers of people with chronic conditions with a specific section “Fact & Tips Sheets for Dementia” https://www.caregiver.org/health-issues/dementia

o Topic examples: Bathing, Driving, Caregiving and Controlling Frustration, Dental Care

AARP http://www.aarp.org/Caregivingo Resources for caring for family members with

chronic illnesses including: Prepare to Care Guide; Caregiving Basics, Financial and Legal, Caregiver Life Balance, Local Resource Solutions

Wisconsin Department of Health Services http://www.dhs.wisconsin.gov/dementia/families.htm

Online Training for Family Caregivers including care for the caregivers

Geriatric Fast Factshttp://www.geriatricfastfacts.com/Geriatric Fast Facts are accessible, concise, and clinically actionable 1-2-page reports on Geriatric topics including dementia. Easy to bookmark the website on any mobile device for instant access.

Long Term Care Services - #41 – Defines the options for geriatric living and associated levels of care

Dementia Caregiver FAQs GFFCaregiver GFF

The Final Step: The last step is to link your knowledge of carer’s needs and associated resources with the conversation! We can help. Review the “Caregiver Conversations” document to better identify topics, questions examples, conversation insights and available resources. A brief example is below.

Topics Examples of questions Insights from conversation Resources available

Caregiver's wellbeing

Self-rated health

In general, would you say your health is…

Excellent Very good Good Fair PoorIs your own health better than, about the same as, or worse than it was six months ago?

Caregivers who rate their own health as poor are at higher risk of serious medical complications, including increased mortality

Family Caregiver Alliance (www.caregiver.org)Taking Care of YOU: Self-Care for Family Caregivers brochure

Health conditions and symptoms

Do you have any health conditions or symptoms?

How often in the past 6 months have you had a medical examination or received treatment for health problems from a primary care physician?

How is your sleep?

Reminds the caregiver to focus on his or her own healthAssesses the effect of caregiving on sleep deficiency, which can contribute to increased morbidity and mortality

Refer to medical services as needed

Life satisfaction, quality of life

In general, would you say your quality of life is…

Excellent Very good Good Fair Poor

Caregivers who report lower satisfaction and poorer quality of life are at risk of increased morbidity and mortality

Consider Short Term Respite Care and referral to Alzheimer’s Association

Refer to Caregiver Stress 8 Item Quiz with resource links

Take the Care Association using Direct Connect

References 1 Thomas P, Lalloue F, Preux P-M. et al. (2006). Dementia patients caregivers’ quality of life: The PIXEL study. Int J

Geriatr Psychiatry 21: 50–56.2HRSA Health Workforce. Training Curriculum (Supplemental Modules for Providers): How Clinicians Can Interact

Effectively with Caregivers. 2017. https://bhw.hrsa.gov/grants/geriatrics/alzheimers-curriculum?utm_campaign=enews12072017&utm_medium=email&utm_source=govdelivery

3Alzheimer's Association. (2017). 2017 Alzheimer's disease facts and figures. Alzheimer's & Dementia, 13(4), 325-373.4 Sanders, A. E., Nininger, J., Absher, J., Bennett, A., Shugarman, S., & Roca, R. (2017). Quality improvement in

neurology Dementia management quality measurement set update. Neurology, 88(20), 1951-1957.5 Collins, L. G., & Swartz, K. (2011). Caregiver care. American Family Physician, 83(11), 1309-17.

6 Barczi, S. Personal Communication. June 11, 2018. 7 Institute for Healthcare Improvement. Tools-PDSA. Accessed May 4, 2018. Plan-Do-Study-Act (PDSA) Worksheet

http://www.ihi.org/resources/Pages/Tools/PlanDoStudyActWorksheet.aspx 8 Vandepitte S, Van den Noortgate N, Putman K, Verhaeghe S, Faes K, Annemans L. Effectiveness of supporting

informal caregivers of people with dementia: a systematic review of randomized and non-randomized controlled trials. Journal of Alzheimer's Disease. 2016 Jan 1;52(3):929-65.

9 Harris DP, Chodosh J, Vassar SD, Vickrey BG, Shapiro MF (2009). Primary care providers' views of challenges and rewards of dementia care relative to other conditions. Journal of the American Geriatrics Society57(12):2209-16.

10 Mitnick, S., Leffler, C., Hood, V.L. et al. (2010) Family caregivers, patients and physicians: ethical guidance to optimize relationships. J Gen Intern Med. 25(3),255-60. 11 Alliance, F. C. (2009). Taking care of you: Self-care for family caregivers. https://www.caregiver.org/taking-care-you-self-care-family-caregivers12 Schreiber, M. (2017). My Two Elaines: Learning, Coping, and Surviving as an Alzheimer’s Caregiver. Bothell, WA. Book Publishers Network.