Resources & guidance
You do not have to figure this out alone
A dementia diagnosis raises hundreds of questions at once. We have gathered the most useful information, trusted organisations, and practical guidance to help you navigate what comes next — for free, with no strings attached.
The basics
Understanding dementia
Dementia is an umbrella term for a range of conditions — each with different causes, progressions, and care needs. Understanding which type your loved one has helps you plan effectively.
Alzheimer's disease
The most common form of dementia, accounting for 60–80% of cases. Alzheimer's is a progressive brain disease that gradually destroys memory, thinking skills, and eventually the ability to carry out basic daily tasks. Symptoms typically appear in mid-60s in late-onset cases.
Early stages often involve forgetting recently learned information, asking the same questions repeatedly, and increasing reliance on memory aids. As the disease progresses, symptoms become more severe, eventually requiring full-time care.
Learn more at Alzheimer's AssociationVascular dementia
The second most common type, caused by reduced blood flow to the brain — often following a stroke or series of mini-strokes (TIAs). Symptoms may appear suddenly after a vascular event and can vary significantly depending on the area of the brain affected.
Unlike Alzheimer's, vascular dementia often presents with more pronounced problems with planning, decision-making, and speed of thinking rather than memory loss in the early stages.
Learn more at Alzheimer's SocietyLewy body dementia
A common but frequently misdiagnosed type of dementia, caused by deposits of a protein called alpha-synuclein (Lewy bodies) in nerve cells. LBD combines cognitive symptoms with physical features similar to Parkinson's disease, as well as vivid visual hallucinations and significant fluctuations in alertness.
People with LBD may have days of near-normal cognition alternating with days of significant confusion. This variability can be confusing for families and is a key diagnostic feature.
Learn more at LBDAFrontotemporal dementia
FTD affects the frontal and temporal lobes of the brain — areas responsible for personality, behavior, and language. It is one of the most common causes of early-onset dementia, often affecting people in their 40s, 50s, and 60s.
Unlike Alzheimer's, memory may remain relatively intact in early FTD. The most common early symptoms are personality changes, loss of empathy, socially inappropriate behavior, or difficulty with language — which can be deeply distressing for families to witness.
Learn more at AFTDWho can help
Key support organisations
These organisations offer guidance, helplines, carer support, and research updates. They are all free to contact and do not require a referral.
Alzheimer's Association
The leading voluntary health organisation in Alzheimer's care, support, and research. Their 24/7 helpline (800-272-3900) connects you with dementia specialists and trained staff at any hour. They also offer local chapter support groups and a comprehensive online resource library.
Visit alz.orgCaregiver Action Network
A non-profit organisation supporting the more than 90 million family caregivers across the United States. CAN offers peer support, educational resources, and advocacy programs specifically designed for unpaid family caregivers managing a loved one's care.
Visit caregiveraction.orgFlorida Department of Elder Affairs
Florida's state agency for aging services, connecting residents to local services through SHINE (Serving Health Insurance Needs of Elders) counselors, Aging Resource Centers, and a network of Area Agencies on Aging. DOEA can help you navigate state-funded support programs.
Visit elderaffairs.orgPlanning ahead
Legal & financial guidance
Putting legal and financial arrangements in place early — ideally while the person with dementia can still participate in decisions — is one of the most important and often overlooked steps families can take.
Lasting Power of Attorney
A Durable Power of Attorney allows a trusted person to make financial and legal decisions if your loved one loses capacity. It must be set up while the person still has mental capacity — waiting too long can require expensive court intervention. Consult an elder law attorney early.
Medicare & Medicaid
Medicare covers many medical services but has limited coverage for long-term care. Medicaid can cover more — including some home care — for those who qualify financially. Florida Medicaid's HCBS waivers may fund care services at home. A SHINE counselor can review your specific situation free of charge.
Veterans benefits
If your loved one is a veteran, significant benefits may be available — including the Aid & Attendance pension, which can provide meaningful financial support for in-home care costs. The VA benefits system is complex; a VA-accredited attorney or Veterans Service Organization (VSO) can guide you without charge.
Advance directives
A healthcare advance directive (living will) and a healthcare surrogate designation allow your loved one to specify their wishes for medical care and name someone to make healthcare decisions on their behalf. Florida law has specific requirements — an elder law attorney can prepare these documents quickly and affordably.
Practical advice
Tips for family caregivers
These are the things experienced carers consistently say they wished they had known sooner. Not medical advice — just honest, practical guidance from families who have been where you are.
- Accept help when it is offered — and ask for it when it is not. Carrying everything alone is not a virtue; it is a path to burnout.
- Establish and protect simple daily routines. Consistency and predictability reduce confusion and agitation significantly in many people with dementia.
- Focus on the emotion, not the facts. When your loved one becomes distressed — even about something that did not happen — acknowledge how they feel rather than correcting them.
- Adapt the home environment early. Simple changes (removing trip hazards, adding nightlights, labelling cupboards) can meaningfully reduce accidents and stress for everyone.
- Keep a care journal. A brief daily record helps you spot patterns, communicate with medical teams, and recognise how things change over time in a way that memory alone cannot.
- Understand that grief starts before loss. Anticipatory grief — mourning the person you are losing while they are still here — is real, valid, and very common. Seek support for yourself, not just for your loved one.
- Don't underestimate the value of music. For many people with dementia, music from earlier in life remains accessible and deeply moving long after other memories fade. Use it.
- Connect with other caregivers. Peer support — from someone who truly understands — is different from anything a professional can provide. Local support groups and online communities are worth the time.
Still have questions? We are here.
If you would like to talk through any of the information on this page — or just need someone to help you think through what comes next — call or message us. We will always be honest about what we know and what we do not.