The uncertainty after a dementia or Mild Cognitive Impairment diagnosis may feel overwhelming and scary. Making sure everyone involved, including the person living with memory and thinking changes as well as their loved ones, has the support they need is important. After a diagnosis, many Penn Memory Center patients and families ask “what’s next?”. While information and knowledge allow persons living with memory and thinking changes and their loved ones to make informed decisions about their care and support, a lot of information at once may feel too much. You may find it helpful to go through one section or resource at a time, and then come back to this page when you’re feeling ready.
At the Penn Memory Center, our personal experience and ample research show that patients and families who are well-informed about all stages of the disease and who early-on anticipate and prepare for the necessary legal, financial, housing, care-related and other challenges they may face rate their overall quality of life higher than those who are less informed and less prepared.
- Legal and Financial Planning
- Planning for Care
- Caregiver Support
Legal and Financial Planning
Loved ones of persons living with dementia often face difficult healthcare and financial decisions throughout the course of the disease. Start early so that the person living with dementia can be part of the process and share their care wishes. Documents such an advanced directive and durable power of attorney allow a person living with dementia to feel more sure their voice will be heard in healthcare and financial decision-making when they are unable to participate themselves. Families are often grateful when these conversations and documents are completed early on rather than last minute.
What is an advanced directive?
An advanced directive is a legal document that allows a person to dictate their medical wishes in the future should they be unable to communicate those wishes themselves. Not only is an advanced directive helpful for the person living with dementia, but it also provides some relief to loves ones as they are able to make care decisions which align with the person’s wishes. There are two different types of advanced directives: living will and durable power of attorney for healthcare.
You can find many advanced directives forms online. Most advanced directives you can find online already include both a living will and power of attorney. To find an advanced directive for your state, you can click one of the below links:
Prepare to Care: Get Your State’s Advanced Directives
NHPCO: Get Your State’s Advanced Directives
You may also consider asking your primary care doctor for an advanced directive form as many medical institutions have created their own, such as Penn Medicine’s Our Care Wishes.
A copy of the advance directive should be given to your designated health care agent, your doctors, family members and others whom you expect to help when you become unable to communicate decisions about your care.
What is a Durable Power of Attorney (DPOA) for Health care?
A power of attorney for health care is a legal document that allows you to name an individual(s) to make medical decisions on your behalf should you be in a situation where you are unable to do so. Decisions may address treatment, selection of health care providers, residential or home care providers and more. A durable power of attorney means they remain in effect even after the principal becomes incapacitated. This document can be completed without hiring an attorney.
The person who you elect as your medical decision-maker is usually called the health care agent, health care proxy, health care surrogate, health care representative, or patient advocate. When deciding who to make your health care agent, it may be helpful to consider the following:
- Are they comfortable making decisions on your behalf, even if their personal wishes differ?
- Are they capable of talking to and asking questions of medical providers?
- Are they able to stand up for you?
- Are they able to stay calm in crisis?
- Would their emotional connection with you get in the way of making decisions on your behalf?
- Do you feel they understand your wishes?
Common health care agents include a spouse, sibling, parent or friend.
What is a Living Will?
A living will is a document that allows you to specify which medical treatments you would or would not want should you be unable to communicate your wishes. This document can be completely without an attorney. While living wills can vary vastly, the types of medical treatments that may be mentioned include:
- Resuscitation
- Organ donation
- Tube Feeding
- Mechanical Ventilation
Hold a family meeting: The most important part of completing a living will is the conversation you have with your loved ones while completing it. It is helpful to schedule a designated time to have a discussion about the living will with your decision-maker (health care agent) as well as others important to you. While talking about health changes and end of life may feel uncomfortable and overwhelming, the conversation may prevent conflict among family members and lessen the emotional weight for all involved towards end of life.
Legal planning also includes financial planning. After a dementia diagnosis, start financial planning early on so the person with dementia can be actively involved in the discussion and legally sign any documents.
Durable Power of Attorney (DPOA) For Finances?
A financial power of attorney is a legal document that grants a trusted person the power to make decisions about finances and property should you become unable to do so. A durable power of attorney means they remain in effect even after the principal becomes incapacitated. You can create a financial DPOA which goes into effect immediately after it’s signed or one that only goes into effect only under certain circumstances. The DPOA for finances helps people living with dementia and their loved ones to avoid costly court actions, such as guardianship. A financial DPOA is automatically ended upon the principal’s death, which is why it’s important to also have a Will and/or Living Trust.
What is a Will?
A Will is a legal document that helps coordinate the distribution of your assets as well as appoint guardians for your children, if applicable, after your death. The Will allows you to name an executor (the person who will manage the estate) and the beneficiaries (the people who will receive the estate).
What is a Living Trust?
A living trust is similar to a Will in that you can name beneficiaries for your estate. However, if properly executed, the trust will enable your beneficiaries to avoid probate. A living trust is a legal document that allows you to designate yourself or another person (the “trustee”) to manage your assets during your lifetime as well as distribute your assets after your death.
Since everyone’s financial situation is unique to them, some people may choose to consult with an elder law attorney. You can search for elder law attorneys through the National Academy of Elder Law Attorneys.
We recognize financial and legal planning for the future can be confusing. Check out an Association for Frontotemporal Dementia webinar where Penn Cognitive Neurology social worker, Cynthia Clyburn, LCSW spoke about legal and financial planning with an elder care attorney. Webinar: FTD Care Planning with Essential Legal Documents | AFTD (theaftd.org)
Read more about financial and legal planning from the National Institute for Health (NIH): Legal, Financial Planning for Dementia or check out the NIH Legal and Financial Planning for People with Dementia Website, which describes legal planning in more detail.
Planning For Care
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 such 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 overtime. After a diagnosis, social connections are vital to maintaining wellbeing. 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 legal and financial planning]
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, 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
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.
[AARP Prepare to care PDF]
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 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.
Home Care
In-home care includes a wide range of services beneficial to both the person living with dementia and the caregiver. In-home care is flexible and can be arranged to meet your needs, whether you need a caregiver few hours a week or 24 hours a day. There are both medical and non-medical in-home services. Medical care (also known as “skilled”) is usually found through a home health agency. Non-medical services can be found using home care agencies. Some agencies provide both medical and non-medical services. To find home care or home health agencies in your area, contact your primary care physician or reach out to your local Area Agency on Aging. Depending on eligibility, you may be qualified for certain programs that help cover some of the cost of in-home services. Reach out to your local Area Agency on Aging to learn more about these programs.
Below is a general overview of in-home care services provided by home care and home health agencies.
Companion services: Support with leisure activities, outings, supervision.
Person care services: Support with activities of daily living, such as bathing, dressing, toileting, and eating.
Homemaker services: Support with housework like light housekeeping, running errands, laundry, washing dishes.
Skilled care: physical therapy, occupational therapy, wound care, social work, medication management and other needs by a medical professional. Typically, a home health agency provides these services after they have been ordered by a physician.
It’s important to spend time researching and interviewing home care agencies so you find a good match for your loved one. You may find it helpful to tell the home care provider about your loved one and their interests during the interview process.
You can find and compare Medicare-funded home health providers on Medicare.gov.
Questions to ask when interviewing home care providers [PDF]
Adult Day Programs
Adult day programs allow a person living with dementia to safely engage in activities and socialize with others. Adult day programs are different from senior centers because they offer more supervision and oversight. Some adult day programs can also help with medication management and medical needs while a person is in attendance. An adult day center is not only beneficial for people living with dementia, but they also provide respite for the caregiver. Oftentimes a person living with dementia may take a few weeks to adjust to the adult day center, but overtime many enjoy the activities and socialization. Learn more about adult day programs from the Alzheimer’s Association.
Find licensed adult day centers in Pennsylvania
Find licensed adult day centers in New Jersey
Residential Communities
Assisted Living: Assisted living typically offers services such as housing, meals, supportive and activity services, and health care. On average, assisted living can provide about 1.5-2 hours of personal care per day, although some assisted livings may provide more personal care at a higher cost. It’s important to note assisted living facilities are not regulated by the federal government, so they can vary greatly in terms of services provided. Assisted living is often viewed as a bridge between living independently and living in a nursing home. When touring and interviewing assisted livings, it’s important to ask about their experience with residents living with dementia.
Questions to ask about personal care while touring assisted living
Questions to ask about quality of life while touring assisted living
Questions to ask about cost and contracts while touring assisted living
Special Care Units (sometimes referred to as “memory care”): Special care units are designed for people living with dementia. They typically offer services such meals, supportive and activity services, and health care. Most units have 24/7 staffing and often provide about 3 hours of personal care per day, although some units may provide more personal care to those who need it. This means some special care units may be able to support people as their dementia progresses, while others may not be able to provide more intensive care. It’s important to note these units are not regulated by the federal government, so services can vary greatly. These units may exist within other residential settings, such as in an assisted living, or they may be free-standing. Some special care units are locked units while others are not.
Nursing homes (also called “skilled nursing facilities”): Nursing homes provide 24 hour a day care and medical treatment. Staff provide personal care, as well as physical, speech, and occupational therapy when determined necessary. Staff assist with medication management and medical needs, recreation, nutrition, and care planning. Nursing homes are licensed by the state and regulated by the federal government. Some nursing homes have units specifically designed for people living with dementia.
Medicare awards every nursing home a star rating out of five. You can also see the full text of health inspection reports and any complaints filed against the facility. Search for and compare different nursing homes using this tool. While this tool is a helpful jumping-off point, keep in mind that star ratings are not the be-all and end-all of evaluating care. It’s important to tour and interview the prospective facilities. Consider dropping into the facility a few times unannounced, try a meal, and ask residents and their families their thoughts on the facility.
Continuing Care Retirement Communities (CCRCs): CCRCs provide different levels of care (such as independent, assisted living, memory care and skilled nursing care). A resident can move throughout the different levels of care as their health and needs change. If you or a loved one has a dementia diagnosis, it’s important to evaluate the quality of their memory care services as they are not regulated federally. Some CCRCs have a lifetime contract where the monthly rate does not increase as you need more care, while others are fee-for-service – meaning your monthly rate changes based on the level of care needed.
Questions to ask when touring CCRCs [PDF]
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, and grooming; as well as “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 as it relates to 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) also may 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.