Next Steps: Life Planning Tips After an Alzheimer's Diagnosis

The Next Steps : Life Planning Tips After an Alzheimer’s Diagnosis The Next Steps

What you should know… : What you should know… There is no cure, but there are treatments available Alzheimer’s and dementias are unpredictable Changes that occur are part of the disease process There will be good days and bad ones Dementia affects everyone differently There is no magical formula You can still lead a meaningful life You’re not alone.

Ten Steps to Take : Ten Steps to Take Understand the Diagnosis Adjust to Change Learn about Dementia Seek Support Inform Others Partner with your Doctor 7. Get Affairs in Order 8. Take Care of Yourself 9. Face Challenges 10. Live Your Life

Step 1: Understand your Diagnosis : Step 1: Understand your Diagnosis Experienced physicians can diagnosis with 90% accuracy A thorough diagnostic work-up should be completed

Diagnosing Dementias : A thorough diagnostic work-up typically will include: Medical history Mental status evaluation Physical examination Neurological examination Laboratory tests Psychiatric, psychological or other evaluations Diagnosing Dementias

Step 2: Adapting to Change : Step 2: Adapting to Change Coming to terms with a diagnosis takes time Changes to expect can include: Disease stage Health Abilities Feelings Behaviors Hobbies Relationships “The only thing constant is change”

Progression of the Disease : Progression of the Disease Several methods of “staging” exist Most correspond with the three common stages Mild (2 - 4 years or longer) Moderate (2 – 10 years) Severe (1 – 3 years or longer)

Changes in Relationships : Changes in Relationships Changing Roles With memory decline, there is often a shift in responsibilities regarding daily tasks and decision-making. Intimacy Due to cognitive decline, it may no longer be possible to have the same emotional or physical intimacy once shared with partner. Family and Friends Many isolate themselves after a diagnosis. Friends and family may pull away as they do not know what to do or say.

Step 3: Learn about Dementia : Educate yourself Find local & community resources Step 3: Learn about Dementia

What is Dementia? : What is Dementia? Memory loss that interferes with daily activities and social relationships Set of symptoms describing loss of mental functions Remembering Thinking Reasoning Judgment Alzheimer’s Disease is only one of many types of dementia

What is Alzheimer’s Disease? : What is Alzheimer’s Disease? A progressive disorder that attacks the brain and causes the death of brain cells.

2009 Facts and Figures : 2009 Facts and Figures 5.3 million people in the United States are living with Alzheimer’s. Alzheimer's and dementia triple healthcare costs for Americans age 65 and older. Every 70 seconds, someone develops Alzheimer’s. Alzheimer's is the sixth-leading cause of death across all ages in the United States, but fifth-leading cause of death for those aged 65 and older.

What treatment options are available? : What treatment options are available? Pharmacological vs Non-pharmacological

Step 4: Seek Support and Services : Step 4: Seek Support and Services One cannot do everything alone.

Support in your area : Community organizations Faith-based organizations Departments of Aging Senior service centers Hospital patient-education departments Support in your area

Care Services : Respite Care Residential Care Hospice Care Services

Step 5: Inform Others : There are benefits to letting others know about the diagnosis. Step 5: Inform Others

Sharing the Diagnosis : Be straightforward about changes to expect and the disease process Invite family and friends to attend educational programs Encourage honesty from all involved Let friends know they can still be part of your life Sharing the Diagnosis

Sharing with Children : Common Reactions Sadness Curiosity Confusion Frustration Guilt Fear Jealousy Worry Embarrassment Uneasiness Sharing with Children Tips Encourage open communication Be honest and answer their questions Help them understand Explain that it is not contagious Let them know their feelings are normal Create opportunities for them to share feelings Prepare them for changes Let them know they are not to blame Inform teachers or other important people in child’s/teen’s life

Step 6: Partner with your Doctor : A diagnosis is the first step in mapping treatment and care. Good communication with your physician is important, but may take time and effort. Establish a tracking system to stay organized and make the most of the appointment. Care log Medication log List of concerns List of questions Step 6: Partner with your Doctor

Strategies for Successful Visits : Be Prepared Ask questions Gather information Schedule the next appointment Strategies for Successful Visits

Step 7: Get Your Affairs in Order : Talk about the future! The sooner you discuss these matters, the more the person with dementia can participate. Step 7: Get Your Affairs in Order

Making Job Decisions : Try not to make spur of the moment decisions. Talk to your employer. Bring someone along for support. Continue to work for as long as you deem possible. Gather information about employee benefits. Find out how to make claims. Research your options. Is working from home possible? Is there a different position? Is a reduction in hours possible? What are the early retirement options available? Making Job Decisions

Meeting the Demands of Caregiving : Meeting the Demands of Caregiving 66% missed work because of caregiving responsibilities 18% took a leave of absence 13% went from working full time to part time 8% had to give up work completely 7% lost job benefits 8% had to turn down a promotion 6% chose early retirement Statistical sources: “Families Care: Alzheimer’s Caregiving in the United States in 2004”,© 2004 Alzheimer’s Association and National Alliance for Caregiving Fact Sheet: Alzheimer’s Disease Statistics,© 2004 Alzheimer’s Association

Legal Planning* : Consider and ask for referrals to an attorney that specializes in elder law Determine legal capacity Take inventory of existing legal documents Complete legal documents Gather documents needed for meetings with attorney Discuss options available for person with dementia Legal Planning*

Financial Planning : Put in place all of the information, support and resources you will need Review financial documents Discuss the wishes of the person as early as possible Gather the family to discuss putting plans in place Determine how finances might be pooled if necessary Seek professional assistance – ask for referrals from trusted sources Understand the costs involved with care and what benefits may exist Become familiar with the day to day financial tasks Financial Planning *Request a copy of “Money Matters” for detailed information

Financial Impact : Financial Impact Costs often faced Ongoing medical treatment Treatment for other conditions Prescription drugs Personal care supplies Adult day care services In-home care services Full-time residential care services Housing costs How to cover costs Healthcare insurance Disability insurance Long-term care insurance Life insurance Employee benefits Retirement benefits Government assistance Savings and investments *

Step 8: Take Care of Yourself : Eat a balanced diet Exercise regularly Incorporate relaxation Manage medications Limit alcohol intake Get regular check ups Rest when tired Find ways to release stress Stay active and social Step 8: Take Care of Yourself

Step 9: Face Challenges : Finding an emotional balance Maintaining independence Family interaction and dynamics Day to day obstacles Creating a safe environment Step 9: Face Challenges

Dealing with Feelings : Dealing with Feelings Coping mechanisms differ from person to person. Do what’s best for you. Experience the feeling Talk to someone Cry Laugh Keep a journal Enjoy activities

Overcoming Family Challenges : Overcoming Family Challenges Acknowledge feelings in order to work through them. Share the caregiving roles and responsibilities. Discuss problems and feelings rather than bottling them up. Respect each other’s differences. Each person has a special role in the care of the loved one. Communication will help everyone stay informed and involved.

Tips for Overcoming Day to Day Challenges : Tips for Overcoming Day to Day Challenges Difficult tasks Do not rush to complete tasks Take breaks when needed Ask for help Tackle difficult tasks at your best time of day Communication Find quiet places with few distractions Speak slowly, write things down, or repeat if needed Ask for clarification when needed

Tips for Overcoming Day to Day Challenges : Tips for Overcoming Day to Day Challenges Driving Discuss when and how to make this decision Find out about what services are available Make plans for transportation options For those that live on their own Arrange for assistance with meals, transportation, and chores Arrange for direct deposit Make arrangements for bill paying Leave keys with a trusted neighbor Set up daily visits or calls

Safety Tips : Safety Tips Evaluate the home environment Be aware of dangerous objects and substances Take special precautions to avoid injury during daily activities Adapt to vision limitations Remove or lock up firearms Monitor driving behaviors Be aware of the signs of wandering Enroll in Safe Return® Plan ahead when traveling Be prepared in disaster situations

Step 10: Live Your Life! : Continue doing things you love Modify when necessary Focus on what you can do, rather than what you can no longer do Be social and converse with others as often as possible Engage in mental and physical exercises Maintain religious involvement Laugh, love, and enjoy what life has to offer Step 10: Live Your Life!

How we can help : How we can help Information and Referral Helpline 713.314.1313 www.alz.org/texas Education and Training Individual and Family Community Professionals Support Groups Over 50 groups available Offered in different languages Specialty groups for male caregivers, early stage, and young onset Care Consultation Assessment of needs Individualized planning Medic Alert + Safe Return Nationwide identification registration program Research Over $200 million since 1982 Advocacy Join the cause! Help us secure more funding for Alzheimer’s research by writing your political leaders.

Contact Us : Contact Us Alzheimer’s Association Houston and Southeast Texas Chapter 2242 W. Holcombe Blvd. Houston, Texas 77030 Main: 713.266.6400 Helpline: 713.314.1313 Or: 800.272.3900 www.alz.org/texas