Living with Dementia

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

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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

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Meet Bill and Ann

Bill (78) and Ann (75)

• Married 55 years
• Live in Richmond, moved from North Carolina 30 years ago
• Two children, Katie (50) and Karl (45)
• Katie lives in Georgia and has two children
• Karl is unmarried and lives in New York
• Bill and Ann are active in their church
• Both are retired, Ann was formerly a night nurse

2 years ago Ann began showing signs of dementia

• Short term memory loss
• Confusion about time and places
• Difficulty with routine tasks

Bill and Ann visit their Primary Care Physician

• Exam
• Neurological Exam
• Diagnostic Testing

Diagnosis: Ann has Dementia

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Ann has been diagnosed with Dementia:

What Next!?!

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Take a moment, organize your thoughts, develop a plan

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Emotional / Physical Health Considerations

It is common to occasionally experience emotional distress

• Anger – a response to feeling frightened, frustrated, embarrassed, or humiliated
• Depression with dementia – change in mood, delusions, agitation, and anxiety
• Anxiety – difficulty processing information and experiences; processing new places and faces; memories of familiar places and faces fade away
• Mood swings – frustrated by a loss of abilities; being scared, confused, or tired. Mood swings also occur because of pain, too hot or cold, hungry, or bored

Dealing with the feelings

• Accept your feelings. Work through the bad ones to get to the good ones:

– Pay attention to your feelings and talk them out
– Do things you enjoy, connect with others
– Express your emotions with people you trust
– Use humor, music, massage, writing, gardening, exercise
– Join a support group of people with memory loss

• Focus on strengths
• Ask for help when you need it

Strategies for successful coping with emotional feelings

• Put fewer demands on recent memory; Try memory aid suggestions and checklists
• Keep a notebook containing important information; Journal thoughts or ideas you want to hold on to
• Do activities you enjoy at the time of day you feel best
• Maintain a consistent routine, remind yourself daily what you have to do
• Slow down – do fewer things and allow more time, taking a break if things get difficult
• Mark off days on the calendar to keep track of time
• Find opportunities for exercise and soothing rituals
• Educate yourself about your disease – Stay actively involved in your own health care

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Social / Community Considerations

Communication Changes

• Problems finding the right words or losing your train of thought
• Repeating words, stories or questions
• Getting words confused or out of order
• Problems understanding what someone is saying

Finding new ways to communicate

• Slow down and take your time
• Find a quite place
• Tell people you are having difficulty concentrating, remembering and understanding
• Come back to it later
• Try describing when you can’t name something
• Carry a small notebook to write things down

Family Conflict Concerns

• Lack of understanding about the disease
• Denial
• Emotional response to role and relationship changes
• Lack of awareness of how much help is needed
• They haven’t been asked to help
• Combination of all of the above

Dealing with Conflicting Views

• Have a family meeting
• Discuss your concerns openly
• Seek help from a trusted friend, attorney or clergy
• Work with your physician making sure that everyone is fully prepared for your health needs

Making decisions as a family

• Identify family members who can assist you
• Advise family of what’s needed instead of assuming they know
• Stay in touch
• Hold a family meeting
• Recognize differences
• Share responsibilities
• Continue to communicate feelings / tension

Decision is made – now what?

• Allow yourself to accept help from others
• Focus on what you can do
• Learn as much as you can about dementia
• Work with those you trust to identify where you need assistance
• Share feelings about how it feels to accept help
• Attend a support group to talk to others with similar concerns
• Consider individual or family counseling
• Remember to thank those who support you

It may help to know:

• The changes are part of the disease
• You will have good days and bad days
• Everyone experiences the disease differently
• Try different ideas for coping
• Recognize some ideas will work and others may not
• You are not alone. Over 5 million Americans have dementia
• People who understand what you are going through can help you and your family

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Physical Environment Considerations

Playing it safe – Medications

It can be difficult to remember important things like taking medication

• Use a pill organizer – a care partner can fill it once a week and provide reminders
• Use one pharmacy – coordination of prescriptions and verification of medication compatibility; easy refills
• Keep an up-to-date list of all medications in an easy-to-find place. Be sure it has the name of everything your loved one takes. This includes prescriptions, vitamins, herbals, and supplements. It should also have the dose for each one and how and when to take it.
• Predictable routines help

Playing it safe – Living Arrangements

• In the early stages many people can live alone by creating a dementia friendly home environment.
• An open plan layout to help with navigation – incorporating hand rails, well-lit sitting areas, walk-in showers
• Alarms, sensors and detectors for falls, night time and bathroom activity and exits
• A GPS to provide additional security when they are out of the home
• Realization that at some point living alone is no longer a good option

To Drive or Not to Drive

• Driving should be a part of the safety discussion
• Even in the early stages driving can be affected
• Discuss it openly with family and trusted friends
• Make a plan for good transportation options so as to remain active when driving is no longer safe

It’s time to re-evaluate driving

• Incorrect signaling
• Confusing brake and gas petals
• Driving at inappropriate speeds
• Frequently hitting curbs
• Getting lost in familiar places
• Driving on the wrong side of the road
• Failing to stop at red lights and stop signs

Traveling Planning

• Keep travel simple and manageable: consider short trips and avoid multiple stops
• Be aware that changes in environment can trigger moments of confusion
• Visiting places that were familiar before the onset of dementia maybe easier than visiting new places
• Evaluate options for the best mode of travel
• Plan trips where medical services are easily accessible
• If you are flying or staying in a hotel, inform the staff ahead of time of any specific needs

Traveling in safety and comfort

• Consider a travel partner
• Travel during the time of day when you feel the best
• Allow plenty of time for rest. Don’t over schedule
• Have a back-up plan
• Create an itinerary – give out copies and keep one with you
• Keep a bag of essentials containing medications, comfortable clothes, water, snacks and activities
• Pack necessary paperwork including medical information and emergency contacts

Things to do now:

• Keep emergency telephone numbers at each telephone
• Incorporate kitchen safety strategies
• Use a pillbox or other tools to organize your medications
• Use nightlights
• Ask for help as needed with grocery shopping, meal planning, cooking and household repairs
• Ask family, friends and your physician for advise about when to stop driving

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Financial / Legal Considerations

Medical research confirms that, of all the symptoms, one of the first things people have trouble with in the early stages of dementia is managing finances. This means someone can make really expensive mistakes before anyone knows there is a problem.

• Disorganization
• Late bill payments
• Impulsive large purchases, online shopping
• Falling victim to a scam

Making your wishes known with:

• Financial durable power of attorney
• Medical durable power of attorney
• Living Will
• Last Will and Testament
• Do Not Resuscitate (DNR) Order

Things to do now:

• Get a list of Elder Law Attorneys
• Make legal, medical and financial decisions early
• Appoint a trusted family member or friend to help manage finances
• Take family members or friends to appointments
• If meeting with a legal and/or financial professional, write a list of questions to ask when you meet

Handling Finances

1. Have a conversation – Money is a difficult subject to discuss, especially with family. If you want to be allowed to help with finances, it is important to communicate that is your intention is to help.

2. Simplify

• If there are multiple bank accounts, move everything to one bank
• If there are several investment accounts with different companies, consolidate accounts with one company
• Additionally if you are acting as conservator, trustee, or with power-of attorney, it is also important to understand what it means to act as a fiduciary. It means you must focus solely on what is in the best interest of the person you are helping and you cannot manage another person’s money is a way which benefits you.
• A professional advisor can help you ensure you do things right

Financial Planning

1. Understanding Insurance Policies

• Long Term Care Insurance – what does it cover, how is it paid, benefit caps
• Cash Balance Life Insurance – Consult with your insurance agent to clarify and understand the benefits for each policy
• Health Insurance

2. Retirement Benefits

• When can you access your retirement plan(s) – age, illness, disability
• Penalties for early withdrawal
• Social Security & Social Security Disability

3. Personal Savings and Assets

• Checking and Savings accounts
• Home and Land  Deeds or Mortgage paperwork
• Titles to cars, boats, other vehicles

4. Government Programs

• Medicare
• Medicaid
• Auxiliary Grants

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Stay Positive, You are Not Alone

• Be proud of yourself for having the courage to tell
• Inform family and friends – Ask for their help in telling others
• Tell people you sometimes have difficulties concentrating and remembering
• Tell people that just because you have dementia does not mean you need help with everything
• Let people help you! Know that it makes them feel good to help

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Dementia Resources

Assisting Hands Home Care
1606 Santa Rosa Rd., Suite 125, Henrico, VA 23229
(804) 500-9787
Contact: Cathy Hamlin, Executive Administrator

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

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

AARP Virginia
707 East Main Street, Suite 910, Richmond, VA 23219
1-866-542-8164

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Community Resources – Memory Cafes

Tri-Cities
Petersburg Public Library
201 W. Washington Street, Petersburg, VA 23803
4th Wednesday Month, 3:00 pm – 4:00 pm

Richmond Area
Great Hope Baptist Church
2101 Venable Street, Richmond, VA 23223
3rd Thursday Month, 11:00 am – 1:00 pm