Living with Dementia

Introduction and Self-Care for the Journey

The journey of dementia is a lengthy road, requiring endurance and patience for the long-haul. It is vital to practice self-care to avoid the burnout and resentment that can often accompany extended periods of supporting a someone with no break. Even if one intends to be a primary caregiver, seeking respite care services is highly encouraged, providing an opportunity to rest and recharge while the individual with dementia still receives attentive support. 

Just because someone has been diagnosed with dementia doesn’t mean they can’t take steps to care for themselves, either. One in ten Americans over the age of 65 live with some type of dementia and many still go on to live active, fulfilling lives despite the challenges of their condition. Taking steps to adapt one’s lifestyle to accommodate their disability, emotionally coming to terms with a diagnosis and practicing additional self-care techniques can drastically improve one’s quality of life. 

Thanks to the internet, connecting with others in similar situations has never been easier. Caregivers can now join digital communities where they can ask for advice, share their experiences and feel less alone in their time-consuming duties. Those with dementia can connect with others in different stages of their journey, and find comfort in the companionship of others going through the same ordeal.

Here are some useful online resources for both caregivers and individuals diagnosed with dementia to practice self-care and find camaraderie with others:

Live Well | Alzheimer's Association - Tips on caring for one’s self, reducing stress, and navigating daily life with dementia. 

Tips for People with Dementia (alzheimers.gov) – Advice on maintaining a healthy and active lifestyle, getting enough sleep and staying safe. 

Living Well with Dementia in the Community (acl.gov) – A helpful pamphlet providing information on various community resources available for those with dementia.

Coping with Your Dementia Diagnosis | Veterans Affairs (va.gov) – Exploring ways to cope with the reality of receiving a dementia diagnosis.

Tips for Living Alone with Early-Stage Dementia | National Institute on Aging (nih.gov) – More tips on living alone with dementia, including making daily tasks easier and ways to improve physical and mental health.

Memory Café’s and Activities– Event calendar events offered  through Dementia Friendly Baltimore County

Memory Lane TV - Good alternative to watching regular TV.

My Life TV - Dementia-friendly programs can be enjoyed.

Zinnia TV – Opportunity for entertainment for persons living with dementia.

Baltimore County Caregivers Support Program – Discover load resources, education and respite assistance.

Book Library for free usage on Dementia topics are available through the Baltimore County Public Library and or Broadmead Wellness Center’s Dementia Library.

Caregiver Health | Alzheimer's Association – Resources on how to deal with stress, depression and grief as a caregiver.

Tips for Caregivers and Families of People with Dementia (alzheimers.gov) – Advice on how to care for oneself while caring for another.

Take Care of Yourself as a Caregiver | National Institute on Aging (nih.gov) – Useful infographic on ways to lower stress and boost one’s mood.

Caring for Yourself When Caring for Another (cdc.gov) – List of resources for caregivers to locate local respite care providers.

Caring for Yourself - Family Caregiver Alliance – Exploring a variety of approaches to self-care, from stress management to spirituality.

A Caregiver’s Guide to Coping with Stress and Burnout - Caring.com – Description of what caregiver burnout is and how to recognize, prevent, and recover from it.

5 Tips To Recover From Caregiver Burnout - Caring.com – Ways to recover from and prevent additional burnout resulting from being a caregiver.

Class 3 Module 2: Recognizing and Handling Caregiver Anger - Family Caregiver Alliance – An informative video detailing tips on how to diffuse heated situations that may arise when caring for another.

Dementia / Alzheimer’s Caregivers: Deal with Stress & Find Support (dementiacarecentral.com) – Helpful primer to becoming a caregiver and navigating the emotions that accompany the duty of providing care for a person with dementia.

Respite Care for Alzheimer’s & Dementia Caregivers (dementiacarecentral.com) – Overview of the types of respite care available, costs, methods of payment and how to locate a provider.

Respite Care | Alzheimer's Association – Another informative site detailing the variety of respite care options available for caregivers.

National Family Caregiver Support (maryland.gov) – Local caregiver support resources for Maryland residents.

Cruising through care giving : reducing the stress of caring for your loved one : FitzPatrick, Jennifer L. (Jennifer Lubaczewski) : Free Download, Borrow, and Streaming : Internet Archive – Detailed written resource from an experienced gerontologist and caregiver.  Free to read with free Internet Archive account.

Evidence Based Virtual and In-Person Workshops for Caregivers are offered by Baltimore County Department of Aging, the Maryland Living Well Center of Excellence and the National Council on Aging.

Support Groups | Alzheimer's Association – virtual support groups and online message boards for both people living with dementia and those who care for them. 

Alzheimer's Foundation of America | Alzheimer’s and Dementia Support Groups (alzfdn.org) – Zoom support groups covering specific themes related to dementia caregiving, offered in both English and Spanish. 

Alzheimer's Foundation of America | Welcome to The AFA Teal Room (alzfdn.org) – 24/7 online virtual therapeutic activities for people with dementia.

Greater Maryland Chapter Alzheimer's Association – Local Maryland-based support groups offering both online, in-person and hybrid settings.  Variety of tailored experiences available including Latino, Korean, LGBTQ+, Young Onset Dementia and more.

JCS Memory Café - Jewish Community Services (jcsbalt.org) – Free, inclusive and in-person memory café for caregivers and people with dementia in northwestern Baltimore.

Virtual Discussions | Dementia Action Alliance (daanow.org) – Free Zoom discussions covering a variety of topics related to living with dementia.

Living with Dementia Road Map

Where to Begin – Understanding Memory Changes

Memory loss and a waning cognitive function are common realities of aging, but where is the line between predictable decline and dementia drawn? Everyone will sometimes forget what day of the week it is, or that their car was due for an oil change, only to remind themselves later. When someone begins having trouble digesting and retaining new information, having difficulties in completing tasks that were once second nature, and exhibiting drastic and unexplained changes in mood, it becomes time to consider the possibility of dementia. Below are sources for understanding the signs of dementia, as well as free memory assessments to gauge one’s symptoms. Of course, no online resource could ever replace the expertise a doctor can provide, so it is highly recommended that medical professionals are consulted should warning signs become apparent. 

Find a Neurologist/Geriatrician Near You –  Search tool through Alzheimer’s Association.

10 Early Signs and Symptoms of Alzheimer’s & Dementia | alz.org – Detailed list of warning signs to look out for in regards to early-stage dementia.

What Causes Memory Loss? Symptoms Assessment | alz.org – Useful guides for both individuals who’ve noticed cognitive changes in themselves, as well as for those who’ve noticed changes in someone they know.

What Is Dementia? Symptoms, Types, and Diagnosis | National Institute on Aging (nih.gov) – Informative overview on what dementia is, its causes, symptoms and how it is diagnosed.

Dementia: Is This Dementia and What Does It Mean? - Family Caregiver Alliance – Explanation of the different types of dementia.

MyMemCheck: Mansbach Health Tools, LLC - Testing - Cognitive - Dementia Resource (dementiaanswersdirectory.com) – Free online memory assessment.

Alzheimer's Foundation of America | Memory Screening (alzfdn.org) – Learn more about memory screenings and schedule a free virtual memory assessment.

Seven steps to managing your memory: what's normal, what's not, and what to do about it: Budson, Andrew E., author: Free Download, Borrow, and Streaming: Internet Archive – Detailed text on how aging affects memory and cognitive function.  Free to read with free Internet Archive account.

Five Steps to Living Well – Parkinson’s Foundation – Tips for managing your diagnosis.

Maximizing Independence at Home – Mind at Home Program: A comprehensive and scalable home-based dementia care navigation program.

Dementia Friendly Baltimore County is pleased to provide the following information on this page to assist you and your care partners in “Living with Dementia.” If you would like additional assistance and/or resources, you are welcome to contact the following sources:

Bench Stop #1 - Evaluation and Education

Being diagnosed with dementia is an overwhelming event for both the individual receiving the news as well as those around them. All of a sudden, the future feels finite and the adjustment to this new reality is accompanied by a barrage of questions in regards to how this diagnosis will affect day-to-day life, how to plan for care, and what resources are available. While this moment may feel isolating, it is essential to remember that no one is alone on this journey. The State of Maryland, the federal government and non-profit organizations offer a wide variety of financial, material and legal assistance for people afflicted with dementia. 

Please visit the links provided below to discover some of the resources available to both patients and caregivers. 

Alzheimer's & Dementia Resources | Alzheimer's Association – Variety of resources for people with dementia and caregivers.

Alzheimer's Foundation of America | AFA Helpline (alzfdn.org) – Connect with a licensed social worker 7 days a week via a Toll-Free Helpline.  Text and Web Chat options available in over 90 different languages.

Office of Health Care Quality – Find long term care facilities or file a complaint.

Aware Share Card | Dementia Society of America – Free, durable cards that let others quickly and quietly understand how to better accommodate an individual with dementia. 

Dementia Resource Directory - Find Dementia Resource - Dementia Society of America (dementiaanswersdirectory.com) – Directory for finding local dementia-related resources.

Resources for People with Alzheimer’s Disease and Related Dementias (alzheimers.gov) – List of useful resources for individuals with dementia.

Disability | SSA – How to apply for disability benefits through the Social Security Administration.

CareNav™ - Family Caregiver Alliance - CareNav™ is a free user-friendly tool designed to help families navigate the complexities of the caregiving journey.

Baltimore County State Health Insurance Program (SHIP) – Call 410-887-2059 to assess Medicare and Health Insurance coverage.

Financial Eligibility Guidelines for federal, state and local government assistance.

Maryland Insurance Administration – Information on long term care insurance.

Certified Financial Planners Near Me – Search engine to find local resources and education.

Medicare | Alzheimer's Association – Comprehensive resource on Medicare and how to enroll.

Getting Financial Help for Dementia & Alzheimer’s Care (dementiacarecentral.com) – Useful guide detailing a variety of methods for obtaining financial assistance.

Welcome to Benefits.gov | Benefits.Gov – Register for government benefits. 

Worry Less and Age Better with Benefits Checkup – See what benefits and programs one may qualify for.

Maryland Access Point | Baltimore County Government (baltimorecountymd.gov) - Entry point for older adults to obtain information and referrals to services, including legal.

Free Advance Directives from the Maryland Attorney General

Elder Law Attorney Near You – Alzheimer’s Association list of attorneys and firms practicing elder law.

Senior Legal Assistance (maryland.gov) – Free legal services for Maryland senior citizens.

Home - Maryland Legal Aid (mdlab.org) – Free civil legal services available for financially eligible Maryland seniors.

Spousal Impoverishment Regulations in Maryland – Learn how to protect lifetime savings.

Baltimore County Department of Aging Center Connection Program – Support program in senior centers.

Caregiver Support Program | Baltimore County Government (baltimorecountymd.gov) - Program offering a variety of resources to help caregivers adequately tend to their care recipients as well as take better care of themselves.

Dementia Friendly Baltimore County | Baltimore County Government (baltimorecountymd.gov) – Resources, events and newsletters pertaining to providing care for individuals with dementia.

Ombudsman Program | Baltimore County Government (baltimorecountymd.gov) – Free advocacy services for individuals living in long-term care facilities.

Maryland Area Driver Rehabilitation Programs – list of driver rehabilitation programs available in Maryland.

CountyRide | Baltimore County Government (baltimorecountymd.gov) - Specialized transportation services for general purpose trips to County residents that meet certain criteria.

https://www.mta.maryland.gov/mobility - Learn about Mobility, a shared ride service offered by the Maryland Department of Transportation.

My Mobility Plan (cdc.gov) – Tips on driving safely, as well as how to utilize other methods of transportation.

Driver Safety Programs – AARP offers resources and education for increased safety.

Baltimore County Department of Aging Loan Closet and Assistive Device Information - - Free durable medical equipment for County residents with any illness, injury, or disability, regardless of age.

Maryland Durable Medical Equipment Re-Use - Free durable medical equipment for Marylanders with any illness, injury, or disability, regardless of age.

Dementia Friendly Baltimore County is pleased to provide the following information on this page to assist you and your care partners in “Living with Dementia.” If you would like additional assistance and/or resources, you are welcome to contact the following sources:

Bench Stop #2 - Adjustment and Support at Home

According to the CDC, roughly 80% of people with dementia still reside in the comfort of their own homes, where both family members and hired caregivers provide them with the support they need. Once someone receives a diagnosis of dementia, there are many proactive measures that can be taken in order to improve the safety of their dwelling. 

Provided below are resources on modifying homes to be more dementia-friendly, as well as how to find in-home caregivers for people with dementia. 

Understanding behaviors and modification techniques – Information from Alzheimer’s Association.

Communication Tips and Handling Troubling Behavior Resource by the Family Caregiver Alliance.

Alzheimer's Foundation of America | The Apartment-A Guide to Creating a Dementia-Friendly Home (alzfdn.org) – A virtual tour of a dementia friendly living space.

Home Safety Checklist Topic Sheet (alz.org) – Detailed safety checklist for preventing dangerous situations from occurring in the home.

Dementia - keeping safe in the home: MedlinePlus Medical Encyclopedia – More safety tips, including measures to take in case an individual with dementia wanders away from home.

BCAUSE Program for Home Modifications - Funding to provide home repairs and safety modifications to low-income county residents 65 and older.

Maryland Access Point (MAP) can provide a resources list of home care options, home modification assistance, certified aging in place specialists, home delivered meals, adult day programs, case management and more.

Housing Home (maryland.gov) – Rental assistance, housing rights for people with disabilities, and home accessibility modification resources.

Maryland Community for Life - Maryland Community for LifeSM is an innovative program developed by the Maryland Department of Aging to support older adults as they age at home. Three core services define the Community for LifeSM program: home maintenance, service navigation, and transportation.

Community Living Social Service Benefits – Benefits provided by the State of Maryland, including assistance with utility bills.

In-Home Care | Alzheimer's Association – Information on the various types of in-home services as well as resources for finding local providers.

At Home with Alzheimer’s Disease – Useful adaptations to the home environment.

Building a Care Team | Alzheimer's Association – Tips on building a care team.

Dementia Friendly Baltimore County is pleased to provide the following information on this page to assist you and your care partners in “Living with Dementia.” If you would like additional assistance and/or resources, you are welcome to contact the following sources:

Bench Stop #3 - Community Living Options

Whether it be the preference of the person with dementia or due to the severity of their condition, community living options may offer the best environment for care. No facility is the same, with each offering different degrees of autonomy to the resident, so it is important to decide which type of service is best for one’s own specific circumstances. The Baltimore County Department of Aging’s Ombudsman Program offers free advocation services to long-term care (LTC) residents, educating them about their rights as LTC residents and resolving issues and complaints on their behalf.

 Resources on finding the right LTC facility, as well as contacting the Ombudsman Program are listed below. 

Ombudsman Program | Baltimore County Government (baltimorecountymd.gov) – Free advocacy services for individuals living in long-term care facilities.

Housing and Community Services | Baltimore County Government (baltimorecountymd.gov) – Directory of available senior housing options in Baltimore County as well as available subsidies for lower income individuals.

Long-Term Care | Alzheimer's Association – Information on the types of long-term care facilities available, as well as how to choose the right one.

Search For Housing Options Near Me – Tool from Alzheimer’s Association.

Long-term care | National Institute on Aging (nih.gov) – Resources on how to locate long-term care facilities, as well as pay for them.

LTC Home | ACL Administration for Community Living – Directory for finding local long-term care facilities.

Finding a Nursing Home | CMS - Find and compare Medicare-certified nursing homes.

Community Resources 2024 – Comprehensive listing of home health agencies, assisted living, long term care facilities can be found within pages of annual publication. Hard copy available through Maryland Access Point of Baltimore County at 410-887-2694.

Dementia Friendly Baltimore County is pleased to provide the following information on this page to assist you and your care partners in “Living with Dementia.” If you would like additional assistance and/or resources, you are welcome to contact the following sources:

Bench Stop #4 - End of Life Care Options

Planning for the end is not easy, and requires complicated and emotional conversations with everyone involved. It is important to have these discussions as early as possible, so the wishes of the individual with dementia can be confirmed and carried out should they reach a state where they are no longer able to express their final requests. Dialogues about hospice treatment, funeral plans and last will and testaments should all take place.

Information on how to approach these subjects, as well as finding suitable hospice or palliative care are provided below.

Late-Stage Alzheimer's & Dementia Caregiving | alz.org – What to expect when caring for someone with late-stage dementia.

Leaving Your Legacy | Alzheimer's Association – Ways for individuals with dementia to reflect on their lives and how to leave a positive, lasting impression on others.

End-of-Life Planning | Alzheimer's Association – Important topics to consider when it comes to planning for the end of one’s life.

End of life | National Institute on Aging (nih.gov) – End-of-life considerations for caregivers.

What Are Palliative Care and Hospice Care? | National Institute on Aging (nih.gov) – Learn about the similarities and differences between two types of end-of-life care.

End With Care | A Resource for End-of-Life Care – Information covering a variety of end-of-life related topics, as well as free webinars and a services directory.

Find Healthcare Providers: Compare Care Near You | Medicare – Find hospice providers covered by Medicare.

Dementia Friendly Baltimore County is pleased to provide the following information on this page to assist you and your care partners in “Living with Dementia.” If you would like additional assistance and/or resources, you are welcome to contact the following sources:

Bench Stop #5 - Moving Through Grief

With dementia, grief does not manifest solely after the death of the afflicted party. It is a long road, and those along for the journey feel an anticipatory grief that progresses alongside the dementia of the person they care for. Everyone mourns differently and no specific way is more valid than another. 

Please take some solace through the resources provided below.

Anticipatory Grief & Alzheimer's Disease - Alzheimer's Caregivers Network (alzheimerscaregivers.org) – Learn to recognize and cope with the anticipatory grief that accompanies caring for an individual with dementia.

Grief & Loss | Alzheimer's Association – Learn about the different stages of grief and how to cope with them.

Supporting Those Who Have Lost Someone — ALZConnected – Forum specifically geared towards finding support from others during times of loss as a result of dementia.

After death occurs checklist | End with Care – List of practical actions to take after the loss of someone with dementia.

Managing ambiguous loss and grief | Alzheimer Society of Canada – Understanding the feeling of ambiguous loss, for both people with dementia and caregivers.

Dementia Grief: A Theoretical Model of a Unique Grief Experience - PMC (nih.gov) – Peer reviewed medical journal detailing model of grief stemming from dementia.

End of Life Decisions: Honoring the Wishes of a Person with Alzheimer’s Disease – Informative brochure that helps navigate the decisions and dialogue that should occur between the caregiver and the individual with dementia in preparation for the end of life. 

Grief and Loss (maryland.gov) - Local grief and loss resources compiled by the State of Maryland.

Dementia Friendly Baltimore County is pleased to provide the following information on this page to assist you and your care partners in “Living with Dementia.” If you would like additional assistance and/or resources, you are welcome to contact the following sources: