Having a flexible plan for the future may help you feel less overwhelmed after a dementia diagnosis. It can be hard to predict what you may want or need in the long-term, which is why having multiple plans can be helpful. There is no one right way to plan for care, but having a conversation early on is one of the most important steps you can take.
Where to begin?
Educate yourself: The first step in planning for the future is getting an accurate diagnosis. Spend time learning more about the diagnosis, dementia, and common symptoms. Caregivers report they are better able to cope with symptom and behavioral changes when they understand what is happening to their loved one. When looking online, read well-known sites like the National Institute of Aging or disease-specific sites such as the Alzheimer’s Association, Association for Frontotemporal Dementia, National Aphasia Association, and Lewy Body Dementia Association.
Hold a family meeting: A formal meeting offers the person living with dementia and their loved ones a space to discuss the diagnosis and its progression over time. After a diagnosis, social connections are vital to maintaining well-being. Communication between everyone involved about experiences and expectations can be helpful in building support and reducing fear. Spend time delegating roles so everyone feels they play a meaningful part in care and support, while also removing some responsibilities from the primary caregiver. It can be helpful to have an impartial moderator during the family meeting, such as a geriatric care manager, social worker, or religious leader.
Complete legal and financial planning for the future: See our legal and financial planning page
Assess the current living situation: Balancing safety and independence can be challenging. Often it can be difficult to know when it’s time to reach out for help. Ensuring your loved one has the support they need at home can actually help increase their independence and well-being. Below are some signs your loved one may need more support or supervision at home:
- They lose weight because they forget to eat or they are no longer able to prepare food for themselves
- They get anxious when left alone
- They are calling you many times throughout the day
- They leave the house and are unable to find their way back
- They make mistakes with their medications
- They are unsafe when cooking and using tools or appliances
- They have difficulty with self-care tasks, such as grooming and bathing
- They make mistakes with money or forget to pay bills
24/7 Wandering Support from The Alzheimer’s Association, in partnership with MedicAlert
Ever wonder what a dementia-friendly home would like? The Alzheimer’s Foundation of America developed a blueprint: AFA Dementia Friendly home
Read more about home safety adaptations for people living with dementia: Home Safety and Dementia
From GPS trackers to medication dispensers to kitchen adaptations, the The Alzheimer’s Store or MindCare Store are goodresources to learn more about what’s out there to support your loved on at home.
Learn more about finding and paying for care here.
Develop a Routine: A daily routine with meaningful activities creates predictability and often reduces anxiety for both the person living with dementia and the caregiver.
Find Support: Everyone copes with a life-changing diagnosis, like dementia, differently. There is no one right way to grieve and find support. Talking with others who are going through a similar experience to yours can provide both emotional support and practical advice. Learn more about Penn Memory Center support programs or reach out to disease-specific organizations to learn about their online communities and support groups.
Paying for and finding care: To plan for your financial needs during the course of dementia, it’s helpful to consider and discuss how much care may cost now and in the future. Since dementia is a progressive disease, the type and level of care will escalate in the future. Costs of care and services offered vary depending on what type of care you access and where you live. Common care costs may include ongoing medical treatment, prescription drugs, home safety modifications, personal care supplies, in-home caregiver services, adult day programs, and residential-type care. It’s important to emphasize that the majority of care, both in-home and residential, is largely privately paid for by the person and/or their loved ones. Read more about paying for care here.
Frequently asked questions about paying for care:
What is the difference between Medicare and Medicaid?
Medicare is a federal insurance policy for people 65 or older and for some people younger than 65 living with a disability. Medicaid is a state program that helps cover medical costs for those with limited income and assets.
Will Medicare or Medicaid cover my stay in an independent living, assisted living, or skilled nursing facility (“nursing home”)?
Medicare does not cover long-term care in Pennsylvania. The only instance in which Medicare would cover a portion of your stay in a skilled nursing facility is for short-term rehabilitation following a qualifying hospital stay (a 3+ day admission, usually due to an illness, surgery, or injury). Otherwise, you will be billed privately.
Medicaid covers long-term care in a skilled nursing facility but not in an independent or assisted living facility in Pennsylvania. Medicaid may help cover the costs of assisted living in other states under certain circumstances, such as New Jersey.
Will Medicare or Medicaid pay for care in my own home?
Medicare does not cover long-term non-medical care at home. This means Medicare does not cover assistance with activities of daily living like bathing, dressing, grooming, and “homemaker” services such as cooking, cleaning, or shopping. The only instances in which Medicare would cover a portion of your home care is if you have a qualifying hospital stay and need temporary assistance to address post-hospital medical needs, or if you have what is called a skilled need. An example of a skilled need is wound care and physical therapy. Read more about this distinction.
Medicaid does help cover the cost of some in-home services, which are coordinated through your local Area Agency on Aging. Find your local Area Agency on Aging. It’s important to note that you must meet specific level of care requirements to be eligible and there is often a waitlist for Medicaid-funded programs.
What about my secondary insurance? Will it cover anything?
Each policy is different, so you will need to contact your health insurance. However, private insurance largely operates according to the same rules as Medicare in terms of long-term care. The one exception to this rule is if you have taken out a long-term care insurance policy. The U.S. Department of Veteran Affairs (VA) may also help cover the cost of some care in-home and in a residential setting. You can contact the VA Caregiver Support Line at 855-260-3274 to learn more about programs and eligibility criteria.