A dementia diagnosis can bring a flood of questions. Families may be trying to understand what the diagnosis means, respond to changes in daily life and consider what kind of care may be appropriate in the months and years ahead.
Knowing where to turn for reliable information can make those questions easier to navigate. Brittany Coleman, Divisional Director of Memory Care at Senior Lifestyle, encourages families to begin with the person in front of them and take the journey one step at a time.
“In the first few weeks following a dementia diagnosis, families deserve clear, practical information that helps them understand what the diagnosis means today and what they can expect moving forward,” Coleman says.
Families do not have to resolve every future situation immediately. Early education can help them focus on a loved one’s current strengths, preferences, routines and quality of life while beginning conversations about future care.
The resources below offer information, practical guidance and connections for families at different points in the dementia journey.
Start with trusted information
When sorting through information online, Coleman recommends looking for established healthcare organizations, government agencies, universities and recognized dementia organizations.
“Credible resources should clearly identify where their information comes from, reflect current research, and be updated regularly,” she says.
She also encourages families to discuss information they find online with a physician or dementia-care professional before making significant changes related to treatment, medication, supplements or care.
Alzheimer’s Association
The Alzheimer’s Association provides information about Alzheimer’s disease and other dementias, educational programs, support groups, online tools and a 24/7 Helpline. Its ALZNavigator tool helps families identify issues and find resources related to their situation.
Learn more: alz.org
24/7 Helpline: 800-272-3900
Alzheimer’s Foundation of America
The Alzheimer’s Foundation of America offers dementia education and caregiver resources, including educational programming and a helpline.
Find more: alzfdn.org
Alzheimers.gov
This federal website brings together information about Alzheimer’s disease and related dementias, including government resources and information about clinical trials.
See more: alzheimers.gov
National Institute on Aging
The National Institute on Aging offers evidence-based information about dementia, diagnosis, treatment, caregiving, communication and safety. Its ADEAR Center provides information and referrals for families, caregivers and healthcare professionals.
Learn more: Alzheimer’s disease and dementia
ADEAR Center: 800-438-4380
Find practical guidance for everyday caregiving
Dementia can affect communication, routines, judgment and the way a person experiences their surroundings. Practical guidance can help families respond to changing abilities while maintaining connection.
Coleman says useful resources address communication, meaningful engagement, supportive environments, caregiver well-being and maintaining abilities.
“Resources that help families understand the person behind the diagnosis are particularly valuable,” she says. “Learning how to adapt an activity rather than eliminate it, create successful routines, use music or reminiscing to encourage connection, and recognize behavior as a form of communication can help preserve dignity, independence, and purpose.”
Association for Frontotemporal Degeneration
Families affected by frontotemporal degeneration can find information, education and support through this organization.
Find more: theaftd.org
Caregiver Action Network
Caregiver Action Network offers resources and practical guidance for family caregivers navigating caregiving responsibilities.
See more: caregiveraction.org
Caregiver Nation
This Facebook group gives family caregivers a space to connect, share information and find peer support.
Learn more: Caregiver Nation on Facebook
Family Caregiver Alliance
The Family Caregiver Alliance offers information and practical guidance for people caring for loved ones with a range of health conditions, including dementia.
Find more: caregiver.org
Lewy Body Dementia Association
The Lewy Body Dementia Association offers information about the condition and resources for families and caregivers.
See more: lbda.org
MedlinePlus
MedlinePlus provides health information from the National Library of Medicine, including information about Alzheimer’s disease and related topics.
Learn more: medlineplus.gov
Connect with caregiver and community support
Dementia care can involve many people and services. Coleman encourages families to build a network rather than taking on every responsibility themselves.
“Families can identify specific ways others can contribute, whether that means providing transportation, preparing a meal, spending time with their loved one, attending an appointment, researching resources, or simply giving the primary caregiver time to rest,” she says.
Specific requests give family members and friends a practical way to participate.
Alzheimer’s Association local chapters
Local chapters can connect families with education, caregiver support groups and information about services in their communities.
Find more: alz.org
Community Resource Finder
This joint resource from AARP and the Alzheimer’s Association helps families locate local dementia-related services, support groups, community programs and care options.
See more: communityresourcefinder.org
Dementia Friendly America
Dementia Friendly America shares information about efforts to make communities more welcoming and supportive for people living with dementia and their care partners.
Learn more: dfamerica.org
Eldercare Locator
The Eldercare Locator connects families with local aging agencies and services, including information about transportation, respite care and community-based support.
Find more: eldercare.acl.gov
Memory Café Directory
Memory cafés offer opportunities for people living with dementia and their care partners to connect socially in a welcoming setting. Dementia Friendly America’s directory helps families find cafés in their area.
See more: Memory Café Directory
National Alliance for Caregiving
The National Alliance for Caregiving advances family caregiving through research, advocacy and resources. Its Memory Loss Conversation Guide can help families prepare to discuss cognitive issues.
Learn more: caregiving.org
Memory Loss Conversation Guide: Read the guide
National Family Caregiver Support Program
The Administration for Community Living’s program connects eligible caregivers with services through state and local programs. Services may include information, counseling, support groups, respite care and supplemental services.
Find more: National Family Caregiver Support Program
Powerful Tools for Caregivers
Powerful Tools for Caregivers offers classes to help family caregivers manage caregiving responsibilities while attending to their own well-being.
See more: powerfultoolsforcaregivers.org
Plan for changing care and support
Families may have questions about living arrangements, transportation, finances, legal matters and when additional care may be appropriate. Coleman encourages families to review these topics before a crisis makes decisions more difficult.
“Families may also benefit from connecting with professionals who can help with legal and financial planning early in the journey,” she says. “These resources are sometimes considered only after a crisis occurs, but accessing them proactively can help families plan and make decisions with greater confidence.”
LongTermCare.gov
The Administration for Community Living provides information and tools to help individuals and families understand and plan for long-term care.
Learn more: LongTermCare.gov resources
Medicare
Medicare’s official website provides information about coverage, plans and healthcare providers.
Find more: medicare.gov
Military OneSource
Military OneSource provides resources for eligible service members and their families, including caregiver information and support.
See more: militaryonesource.mil
National Academy of Elder Law Attorneys
This organization can help families locate attorneys with experience in senior law and related legal matters.
Learn more: naela.org
National Center on Elder Abuse
The National Center on Elder Abuse provides information and resources related to preventing and responding to senior abuse, neglect and exploitation.
Find more: National Center on Elder Abuse
Next Step in Care
Next Step in Care provides guides and information for family caregivers and healthcare providers planning care transitions.
See more: nextstepincare.org
Social Security Administration
The Social Security Administration provides information about retirement and disability benefits, including how to apply.
Learn more: ssa.gov
State Health Insurance Assistance Program
SHIP offers local Medicare counseling through state-based programs. Families can use its national resource to locate counseling in their area.
Find more: shiphelp.org
VA Caregiver Support Program
The VA Caregiver Support Program offers resources for caregivers of eligible veterans, including information about services, education and support.
See more: VA Caregiver Support Program
WISER Financial Steps for Caregivers
The Women’s Institute for a Secure Retirement provides financial caregiving resources, including guidance on protecting money and retirement savings while navigating caregiving responsibilities.
Learn more: Financial Steps for Caregivers
Find safety, travel and technology resources
Technology and specialized programs may offer additional options for safety, communication and daily routines. Coleman recommends viewing these tools as part of a broader care approach.
“Technology has created exciting opportunities to support people living with dementia and their families,” she says. “Its greatest value comes when technology strengthens human connection rather than replaces it.”
AngelSense
AngelSense offers GPS-based location and safety products. Families considering a tracking device should review its features, costs, privacy practices and suitability for their loved one.
Find more: angelsense.com
MedicAlert Foundation International
MedicAlert offers medical identification and related services that can communicate important medical information in an emergency.
See more: medicalert.org
Project Lifesaver
Project Lifesaver works with participating agencies to help locate people who may be at risk of wandering and becoming lost. Families should check local availability and program requirements.
Learn more: projectlifesaver.org
TSA Cares
TSA Cares provides information for travelers who may require additional support during airport screening. Families can review current procedures when planning a trip.
Find more: TSA Cares
Bonus: Books and a guide for caregivers
Families may appreciate resources they can read at their own pace. Coleman recommends these books for different points in the dementia journey.
‘The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss’
Coleman recommends this longstanding resource by Nancy L. Mace and Peter V. Rabins for understanding dementia and navigating practical and emotional aspects of caregiving.
‘The Busy Caregiver’s Guide to Advanced Alzheimer Disease’
By Dr. Jennifer Stelter and Rachael Wonderlin, this practical resource addresses caregiving for someone in the more advanced stages of Alzheimer’s disease. Coleman recommends it for families navigating that stage.
‘Creating Moments of Joy Along the Alzheimer’s Journey: A Guide for Families and Caregivers’
By Jolene Brackey, this guide encourages connection, purpose, comfort and meaningful moments as memory and abilities change.
Senior Lifestyle’s ‘Complete Guide to Dementia for Caregivers’
Senior Lifestyle’s guide offers information for families caring for a loved one with dementia or Alzheimer’s disease.
See more: The Complete Guide to Dementia for Caregivers
Senior Lifestyle’s personal approach to dementia care
Coleman emphasizes that dementia care is highly individualized.
“There is rarely one universal answer because dementia affects every person differently,” she says.
At Senior Lifestyle, Embrace Neighborhoods are designed around each resident’s life story, routines, interests, preferences, strengths and abilities. Personalized programming and specialized training help team members adapt experiences, recognize behavior as communication and create opportunities for connection, engagement, wellness and purpose.
“Embrace does not replace the physician, dementia organizations, community resources, or the family’s knowledge of their loved one,” Coleman says. “Instead, we work alongside those resources to help translate what we know about dementia into meaningful everyday moments.”
Learn more about Embrace Neighborhoods at Senior Lifestyle.
