Empowering Your Caregiving: Learning to Advocate for Your Loved One Amy Smith, MS/CTRS

Memory Care Specialist

Brookdale Senior Living

Who are you Advocating for?

•The person living with the disease.

•The disease itself.

•YOU!

The Person Living with FTD

•At home

•Community Healthcare System

•Residential Healthcare System

At home

• Encourage habilitation. Making the most of skills and abilities still remaining.

• Nutrition: Maintaining a balanced diet. Sensory changes, Agnosia, Finger-foods & mini-meals

• Activities: engaging at their highest level, Recreation & Task Oriented

• Routine: layout of rooms, processes throughout the day

• Wellness: Physical, spiritual, emotional

Encouraging Habilitation

Rehabilitation: Restoring a lost ability

Habilitation: Making the most of an existing ability

“It’s the process, not the outcome”

Nutrition

• Maintaining a balanced diet is still important.

• Beware of safety concerns and food “manageability”.

• Sensory changes, agnosia

• Finger foods and mini-meals

Activities

• Process, not outcome

• Engaging, adapted to meet their current level of needs and abilities

• Resources

• Recreational: hobbies, games

• Task oriented: Household chores

• Sensory

Living Routines

• Layout of Rooms, keeping familiar things in the same place

• Safety

• Processes throughout the day, maintaining routine

Maintaining Wellness

• Physical

• Spiritual

• Emotional

• Psycho-social

Community Healthcare System

•Pharmacy

• Insurance

•Physician

Pharmacy

• Review all meds: prescription, over-the-counter, herbal, non-traditional

• Look for contraindications, interactions, inappropriate prescriptions or inappropriate diagnoses

• Reassess Meds: questions to ask before/after a doctor’s appointment.

Medication use is the most common cause of reversible dementia!

Insurance

• Know your coverage

• What’s covered for experimental treatments, non-traditional medications, symptoms not specifically tied to the diagnosed disease (i.e. appetite stimulants)

• Are there other ways to cover costs?

Physician • Ask for the opportunity to speak with the

physician alone if needed.

• Bring two lists of concerns: give one list to the physician, use other to write down answers to your questions

• Share specifics about any changes in condition

• Ask questions about new medicines or treatments, nutritional supplements

• Don’t forget, other diagnoses can be involved.

Physician

• Make sure you understand how meds should be taken. Samples?

• Make sure the physician is aware of who your “team” is.

• Clarify your responsibilities

• Ask for available community resources, support

• This is the time to QUESTION what you are unsure of, things that aren’t “sitting right” with you!

Residential Healthcare

• Acclimation & Adjustment

• Involvement in care process

• Grievances

• Staying involved

Acclimation & Adjustment

• Different communities have different rules about visitation

• Bring in familiar items: furniture, pictures, clothing

• See what resources are available for you for support and involvement

Involvement in the Care Process

• Share information with staff:

• Time going to bed, time waking up

• Meal preferences

• Bathing preferences

• Favorite things to do

• Good (and not so good) topics of discussion

• Interventions you have found that worked, and those that haven’t!

• Triggers and warnings

Involvement in the Care Process

• Participation in Care Planning meetings

• Tell the community when you want to be notified, and who to be notified.

• Make sure the community has current contact information

• Be involved in direct care if you want to, ask staff how you can help.

Grievances

• Intentions are good, sometimes things happen

• Know the grievance procedure in your community. Start with the community, and know where to go from there.

• Stay calm

• Offer suggestions for a better way.

• Know your state regulations.

• Ask for (and expect) follow up.

Staying Involved

• Family support/education groups

• Get to know the care staff and management

• Visits (what to do, when to come)

• Ask what’s needed

• Volunteer

• You are still part of your loved one’s care team.

The Disease Itself

• Keep up with research

• National Alzheimer’s Project Act (Napa)

• It is an election year!

Keeping Up with Research

• The Association for Frontotemporal Degeneration: www.theaftd.org

• Frontotemporal Dementia Caregiver Support Center: http://ftdsupport.com/

• The National Institute of Health has a web site called ClinicalTrials.gov which show all studies that are currently recruiting for Frontotemporal Dementia patients. http://www.clinicaltrials.gov/ct/search?term=frontotemporal+dementia&submit=Search

• The National Institute on Aging funds Alzheimer's Disease Centers (ADCs) at major medical institutions across the U.S. Duke University is currently the only institution in NC.

• http://www.nia.nih.gov/Alzheimers/ResearchInformation/ResearchCenters/

• www.alzfdn.org

Being Involved with Research

• Clinical Studies • What will your role be?

• Potential Risks and Benefits

• Costs/Compensation

• Informed Consent

• Involvement may require changes in current care

• Confidentiality

• You may not receive individual study results

• You can withdraw at any time

• Ethics Committee

• Organ Donation

• Financial Support

Nat’l Alzheimer’s Project Act (NAPA)

“National Plan to Address Alzheimer’s Disease”

• Bipartisan

• Comprehensive

• National plan, not a federal plan

• “Silver tsunami”

• Recognition of family caregivers

• Affects all of us

NAPA

• Research

• Prevent or effectively treat Alzheimer’s Disease by 2025

• Identify promising research priorities

• Increase enrollment in clinical trials

• Speed efforts to bring medications to the public

NAPA

• Care • Increase public awareness • Develop and distribute culturally-sensitive

education, training and support materials. • Share best practices with family members and

other caregivers • Addressing housing needs and assist in

planning long-term care services • Address the unique challenges of people with

early-onset Alzheimer’s Disease, people with Alzheimer’s Disease and Down’s Syndrome, and racial and ethnic groups.

NAPA

• Healthcare Professionals

• Provide tools to detect cognitive impairment

• Provide up-to-date training to physicians and other healthcare providers.

It’s an Election Year!

• Generate action from elected officials

• Stay on top of policies & legislation

• Town Hall Meetings

• Debates

• Ask!

• Shift Alzheimer’s from a disease to a cause.

Are you taking care of the caregiver? Yes, YOU!!! • 15 Million Americans are unpaid caregivers for

people with Alzheimer’s and other types of dementia.

• Being a caregiver to someone you love can be very rewarding, but it can also exact a high toll.

• Caregiver stress results from the emotional and physical strain of caregiving.

• In turn, caregivers become vulnerable to changes in their own health.

• Often caregivers believe that they have to do everything by themselves.

Wayne Lavengood, LCSW, MFCC:

“Wanted: Full Time Caregiver For Alzheimer Patient. Must have unlimited stamina, be energetic, alert and attentive, friendly and caring, totally understanding and forever patient. Must be willing to always subordinate own needs to those of the patient, and have few if any other commitments. Must know how to handle any situation.

Background degree in psychology or human relations preferred, plus basic nursing skills, basic knowledge of medications and their interactions as well as side effects. Must be prepared to work for no pay and expect little, if any, appreciation of above abilities from the patient.”

Signs of Caregiver Stress

• Feeling tired most of the time

• Feeling overwhelmed

• Sleeping too much or too little

• Gaining or losing a lot of weight

• Losing interest in activities you used to enjoy

• Withdrawing from social connections

Danger Signs:

• No matter what you do, it just isn’t enough

• One feels they are the only one enduring this

• Family relationships begin to deteriorate

• Caregiving interferes with work and social life to an excessive degree

• Refuse to think of self because that would be “selfish”

Danger Signs:

• Coping methods are unhealthy- overeating, under eating, drugs, alcohol, etc.

• No more happy times- exhaustion & resentment

• See asking for help as failure

Caregiver Strategies

Self-Care isn’t Selfish!

• Accept help from others

• Focus on what you are able to provide

• Get Connected

• Join a support group

• Seek social support

• Set personal health goals

• Take care of you- see your doctor too.

How Can I Cope?

• Take one day at a time, but prepare for the future

• Recognize what you can and cannot do.

• Be realistic about your loved one’s changing abilities

• Understand your relationship with the person you are caring for will be different, but it can be meaningful and rewarding

• Keep your sense of humor

• Take time for YOUR emotional needs

Respite Care

Sometimes the best thing you can do for yourself and the person you’re caring for is to take a break:

• Adult care centers

• Day hospitals

• In-home respite

• Short-term stays away

The Caregiver who still has an outside job • Learn to delegate

• Investigate your community support systems

• Investigate support services within the workplace

• Keep information flowing

Can’t find what you need?

Start something!

• Church services

• Buddy system

• Social club

Education & Support

• Frontotemporal Dementia Caregiver Support Center: http://ftdsupport.com/