Workshop Goals:
• Understanding a brief overview of Dementia
• Identify strategies for a “Successful Conversation”
• Learn specific conversation techniques around the following topics:
– Going to the Doctor
– Driving
– Financial Matters
• Dementia Resource Identification
Overview of Dementia
• Dementia is the umbrella term for a person’s decline in memory and other cognitive abilities that is severe enough to interfere with daily life. It is not a normal part of aging.
• It is estimated that approximately 50 million individuals (5 million in the US) are living with Dementia. This number will almost double every 20 years, reaching 75 million in 2030 and 131.5 million in 2050.
• Four Truths about Dementia
– At least two parts of the brain are dying
– It keeps changing and getting worse – progressive
– It is not curable or fixable – chronic
– It results in Death – terminal
• There are four main types of dementia
– Alzheimer’s
– Dementia with Lewy Bodies
– Vascular Dementia
– Frontotemporal Dementia
Understanding Dementia
• Causes and Risk Factors
– Advancing Age – Age may be the biggest risk factor, but dementia can also affect people in their 40s, 50s and 60s.
– Family History
– Genetics
– Risk Factors and Brain Health – alcoholism, drug addiction, diabetes
• Common Symptoms of Dementia
– Memory Loss That Disrupts Daily Life
– Challenges In Planning or Solving Problems
– Difficulty completing familiar tasks
– Confusion with time or place
– Trouble understanding visual images and spatial relationships
– New problems with words in speaking or writing
– Misplacing things and losing the ability to retrace steps
– Decreased or poor judgement
– Withdrawal from work or social activities
– Changes in mood or personality
Structuring Successful Conversations
Dementia inevitably gets worse with time. People with dementia will gradually have a more difficult time understanding others, as well as communicating in general.
Create a Positive Conversation Environment
• Avoid distractions
• Speak clearly and naturally in a warm and calm voice
• Listen actively
• Don’t quibble
• Refer to people by their names
• Use non-verbal cues
• Have patience
• Understand there will be good days and bad days
Avoid Conversation Pitfalls
• Have a conversation in the early stages of the disease, if possible
• Understand how difficult the conversation can be for both you and the person living with dementia (PLwD)
• Ask the PLwD if he/she would like to know if you notice any changes
• Practice your conversation in advance
• Talk when you both are relaxed and comfortable
• Do Not focus on the fears the changes in behaviors are causing
• Avoid making the PLwD feel guilty or afraid
Conversations: Going to the Doctor
Often times elderly parents don’t want to burden their adult children with their ailments – which is why adult children need to voice their worry and concerns by making the issue their issue.
Conversation Starter
“I worry about you and seeing what the doctor says would make me feel better. I would rest easier knowing that we have the most up to date information about your health”
Tips to help with the conversation:
• Use words that are most comfortable for the person
• Suggest Medicare’s FREE Annual Wellness Visit
• Pair an enjoyable outing with the doctor’s visit
• Invite family members to communicate their questions for the doctor
• If still reluctant try using a therapeutic fib
Contact the Doctor Before Routine Checkups
Instead of just showing up for a routine checkup or another scheduled appointment to express your concerns, you might want to either call or write the doctor in advance to prepare him/her for the visit.
What you should do during the doctor’s visit:
• Set the tone for showing respect to your loved one
• Revisit, with the doctor, all documents that assist with future decision-making and care.
• Be ready to ask and answer questions
• Take notes during the appointment
• Discuss future care – Short term and Long term
• Ask for recommendations
• Leave with a plan
It is also important to do the following:
• Share examples of behaviors you have witnessed
• Request a memory screening
• Keep it positive – don’t focus on the person’s deficits
• Acknowledge their fear – it’s normal to be worried and fearful if you suspect something is wrong with your mind and everyday abilities
• Be persistent – always persist gently, never respond with anger
• Invite family to communicate concerns and questions to the doctor
Conversations: When to Stop Driving
• When an individual is diagnosed with dementia, one of the first concerns that families and caregivers face is whether or not the person living with dementia should drive.
• Many people associate driving with self reliance and freedom. The loss of driving privileges is likely to be upsetting.
• Some individuals, recognizing the risks, will limit or stop driving on their own. Others may be unable to assess their own driving skills and may insist on driving even when is no longer safe.
• Families may have to intervene when an individual’s symptoms pose to great a traffic risk.
Behavioral Signs
• Loss of coordination
• Difficulty judging distance
• Gets lost or feels disoriented in familiar places
• Increased memory loss
• Difficulty with decision making and problem solving
• Difficulty processing information
Poor Driving Signs
• Drives too slowly
• Stops in traffic for no reason
• Ignores traffic signs
• Becomes lost on a familiar route
• Lacks good judgement
• Has difficulty seeing pedestrians, objects, or other vehicles
• Has accidents, near misses, or fender benders
These signs will be most noticeable to family and friends who have closely interacted with the individual over time.
Additional Evaluation Strategies
Ask them to be your Co-pilot
• Ask for specific instructions about using turn signals, changing lanes and following the rules of the road
• Look for frustrations and the capability to stay focused – if he/she gets frustrated easily, or loses their focus regularly it might be time for an independent driving evaluation.
Arrange an Independent Driving Evaluation
• The driver evaluation is designed to evaluate cognition, judgement, reaction time and visual spatial perception.
• Virginia has a “DMV Cognitive Impairment Policy” that drivers with a diagnosis of cognitive impairment of any severity or a diagnosis of dementia must:
– Pass the DMV knowledge test
– Provide a medical report before the skills test is administered
– Be monitored every six (6) months by a Driver Rehabilitation Specialist
• Individuals that do not pass the driving tests must discontinue driving immediately
Driving limitations
Because the progression of dementia varies, individuals who have demonstrated the ability to drive safely should still begin to gradually modify their driving. This can reduce the risk of an accident
Encourage:
• Driving only on familiar roads and avoid long distances
• Avoid heavy traffic and heavily traveled roads
• Avoid driving at night and in bad weather
Remember: PLwD who are still able to maintain an active lifestyle often adjust better to the loss of driving privileges if they are slowly taken away.
Reduce the need to drive:
• Have groceries, meals and prescriptions delivered to their home
• Arrange for the barber or hairdresser to make home visits
• Invite family and friends over for regular visits
• Arrange for family and friends to take the PLwD on social outings
Make arrangements for alternate transportation:
• Family and Friends
• Public Transportation
• Taxi, Uber or Lyft
• Senior and Special needs transportation services
Additional Tips
• Plan ahead before an accident occurs
• Express your concern about specific changes you noticed
• Appeal to the person’s sense of responsibility and concern for others
• Other alternate plans for transportation
• Incorporate the voice of an esteemed professional
• Have empathy!
When Persuasion Fails
While it is important to maintain independence and respect for the PLwD, you must put safety first!
• Hide the car keys
• Replace keys with a set that will not start the car
• Disable or sell the car
• Move the car out of sight
Conversations: Legal and Financial Decisions
While this is a touchy subject to most, having these conversations early allows you to connect and enjoy your time together now and in the future.
Overview of Medical and Legal Documents
Medical – Living Will – Describes and instructs how the person wants End-of-life health care managed
Medical – Durable Power of Attorney for Health Care – Gives a designated person the authority to make health care decisions on behalf of the person with dementia
Medical – Do Not Resuscitate Order (DNR) – Instructs healthcare professionals not to perform CPR in case of stopped heart or stopped breathing
Legal – Will – Indicates how a person’s assets and estate will be distributed among beneficiaries after his/her death
Legal – Durable Power of Attorney for Finances – Gives a designated person the authority to make legal/financial decisions on behalf of the person with dementia
Legal – Living Trust – Gives a designated person (trustee) the authority to hold and distribute property and funds for the person with dementia
Planning Tips
• Review Plans regularly and over time
• Put your important papers and copies of legal documents in one place
• Tell a trusted family member or friend where you put all your important papers
• Update documents as needed
• Plan for the future – No one ever plans to be sick or disabled. This kind of planning that can make all the difference as the dementia progresses.
Conversation Tips
• Start discussions early -The rate of decline differs for each person with dementia, and his or her ability to be involved in planning will decline over time.
• Break the conversation into parts, try different times and locations
• Try to avoid having these conversations by telephone, rather do them in person
• Don’t feel like everything has to be covered in one setting – it may help if planning is done in smaller segments; Financial documents one day and legal documents another day.
• Sometimes it helps to start these conversations during a lunch or dinner outing.
Involve Others as Needed
• Invite others to help talk about finances – financial advisors, bankers, Elder Law attorneys can help
• Involve mothers, fathers, sisters and brothers – some families make decisions to pool their resources to ensure care can be provided and expenses can be paid
• It is important to help the PLwD understand why their financial position is important – so the family can help make the best long term care choices
Connect
• Explain – “We are in this together” and “We need to make sure we have a plan in place”
• Reassure – the PLwD that you will be a part of the process now and in the future
Learn
Ask questions rather than telling the PLwD what needs to be done:
• What documents are currently in place?
• Where are they kept?
• Who has copies and who should have copies?
• Who should review the documents?
Help
Gather all of the documents, including banking information, insurance and life insurance, titles or deeds.
• Do any of the documents need updating?
• Are there any other documents that need to be completed?
Finally, don’t forget about yourself. Caring for a person with dementia is challenging work that demands ongoing commitment. It’s a marathon, not a sprint, and that means you must take care of yourself.
• Prepare for the road ahead.
• Develop a personal support plan.
• Cope with changes in communication.
• Develop day-to-day routines.
• Deal with problem behaviors.
• Make time for reflection to help with acceptance.
Remember, if a friend or family member asks if they can help you out, the correct answer is almost always “Yes”.
Cathy Hamlin
CTS, CPC, TSC, PHR
B.S. Health Administration – Duke University
Assisting Hands Richmond Executive Administrator
Assisting Hands Home Care
1606 Santa Rosa Rd., Suite 125, Henrico, VA 23229
804-500-9787
Teepa Snow – www.teepasnow.com
P.O. Box 430, Efland, NC 27243
1-877-877-1671
DARS – Virginia Department for Aging and Rehabilitative Services
1610 Forest Avenue, Suite 100, Henrico, VA 23229
804-662-9333 or 1-800-552-3402
Contact: George Worthington
AARP Virginia
707 East Main Street, Suite 910, Richmond, VA 23219
1-866-542-8164
Alzheimer’s Association – Greater Richmond Chapter
4600 Cox Road, Suite 130, Glenn Allen, VA 23060
804-967-2588 or 1-800-272-3900
Contact: Marie Kolendo, Executive Director
