Understanding Alzheimer’s and Dementia
Just as our bodies change as we age, so do our brains. For some, change takes the form of Alzheimer’s or dementia. Though normal aging can cause memory loss, slowed thinking, or confusion, Alzheimer’s and dementia cause a serious deterioration in the brain that requires intervention.
Dementia is not a normal part of aging. Around 50 million people have dementia worldwide. Alzheimer’s disease contributes to 60-80 percent of these cases. The symptoms associated with Alzheimer’s and dementia have physical, emotional, and economical impacts on those directly affected, their families, and society.
Knowing the signs of Alzheimer’s and dementia is important for early detection for patients and their families. Because these illnesses are progressive, it’s imperative that both those who suffer from it and their caretakers understand the importance of financial, legal, and end of life planning as soon as possible.
What Is Alzheimer’s Disease?
Alzheimer’s disease is a progressive degeneration of the brain that contributes to the majority of cases of dementia. There is no cure for Alzheimer’s, and the causes are largely unknown other than a possible combination of genetics, lifestyle, and environment.
The warning signs of Alzheimer’s disease are important for patients to know as well as their loved ones. Oftentimes, it’s a person’s family who has a better grasp on these signs due to the nature of the disease. Though many of these indicators can be signs of aging or dementia, they may also be warning signs associated with Alzheimer’s.
- Memory loss that disrupts daily life
- Challenges in planning or solving problems
- Difficulty completing familiar tasks
- Confusion with time or place
- Trouble understanding visual images and spatial relationships
- New problems with words in speaking or writing
- Misplacing things and losing the ability to retrace steps
- Decreased or poor judgement
- Withdrawal from work or social life
- Changes in mood or personality
Symptoms of Alzheimer’s will vary based on the stage of the disease that the patient is in. Early symptoms may seem subtle and more in line with normal aging. Moderate symptoms may hinder independence and daily living. Advanced symptoms affect more basic actions such as loss of speech.
- Difficulty remembering newly learned information
- Extreme changes in behavior
- Deepening confusion
- Unfounded suspicion of family, friends, and caregivers
- Difficulty speaking, swallowing, and walking
What Is Dementia?
Dementia is a chronic disorder affecting the mental processes of the brain. It’s a general term describing a decline in mental ability severe enough to cause dramatic changes in everyday life.
Lewy Body Dementia
Lewy Body Dementia (LBD) is associated with deposits of a protein in the brain called alpha-synuclein or “Lewy bodies.” These deposits impact brain chemicals, and the early symptoms are similar to that of Alzheimer’s or schizophrenia. The two diagnoses of LBD are dementia with Lewy bodies or Parkinson’s disease dementia (PDD). LBD can only be accurately diagnosed in an autopsy and can appear in conjunction with other brain diseases that cause deterioration.
- Memory loss happens as a later symptom
- REM sleep issues
- Repeated visual hallucinations
- Impaired attention
- Issues with spatial relation
Vascular dementia is caused by issues in the supply of blood to the brain, typically as a series of minor strokes that lead to cognitive decline, due to a deprivation of vital oxygen and nutrients to brain cells. These strokes can often be silent, and cause changes in brain structure that cause the cognitive issues that lead to dementia. As with many other types of dementia, it can often co-occur with Alzheimer’s.
- Trouble speaking or understanding speech
- Vision loss
Frontotemporal dementia (FTD) leads to loss of function which causes deterioration in behavior and personality, language disturbances, or alterations in muscle or motor functions. There are a number of different diseases that cause FTD, including a group of brain disorders involving the protein tau, as well as a group of brain disorders involving the protein called TDP43. For reasons that are not yet known, these two groups have a preference for the frontal and temporal lobes that cause dementia. FTD also has three different subtypes.
- Loss of empathy
- Poor judgement
- Socially inappropriate behavior
- Repetitive and compulsive behavior
- Abrupt mood changes
Mixed dementia, or dementia multifactorial, is a condition in which a patient is exhibiting multiple characteristics of more than one type of dementia simultaneously. According to the Alzheimer’s association, 94 percent of participants of a study conducted by the Rush Alzheimer’s Disease Center and the Rush Institute for Healthy Aging in Chicago and funded by the National Institute on Aging who were diagnosed with dementia were diagnosed with Alzheimer’s. The autopsies of those diagnosed with Alzheimer’s showed that 54 percent had coexisting pathology.
- Mixed dementia symptoms may vary. In many cases, symptoms may be similar to those of Alzheimer’s or another type of dementia. In other cases, a person’s symptoms may suggest that more than one type of dementia is present.
What Is the Difference Between Dementia and Alzheimer’s Disease?
Alzheimer’s disease is one of the factors that can cause dementia. Dementia is an umbrella term covering the unhealthy decline of the mind with age. Dementia is a disorder in the brain that affects communication and daily activities, while Alzheimer’s is a form of dementia that affects memory and language. Though Alzheimer’s disease contributes to 60-80 percent of dementia cases, dementia can also be caused by Parkinson’s, Huntington’s, or a combination of factors.
Both dementia and Alzheimer’s are degenerative diseases that offer no cure, but there are treatment options to help combat the symptoms and improve quality of life. Early detection can be extremely helpful for both the patient and their caretakers in understanding the weight of a dementia diagnosis. Though some causes of dementia can only be accurately diagnosed through autopsy, many other causes can be diagnosed through brain imaging.
Seven Stages of Alzheimer’s and Dementia
The progression of dementia and Alzheimer’s happens in stages, allowing doctors to identify where a patient is in their decline. From no impairment to very severe cognitive decline, the stages of dementia and it’s most common cause — Alzheimer’s disease — help shed light on the needs of each patient. However, everyone may have variations of symptoms throughout each stage.
- No Impairment: No detectable memory or impairment symptoms.
- Very Mild Decline: Though symptoms may be mild enough to not be noticed or identified as symptoms of dementia, the patient or loved ones may notice minor memory issues that may be easily attributed to normal aging.
- Mild Decline: Mild decline may take the memory and cognitive symptoms one step further in concern. Things like losing belongings frequently, forgetting new names, having issues organizing or planning, and frequent trouble remembering the right word in conversation may appear at this stage.
- Moderate Decline: In moderate decline, memory issues may be easier to identify as being symptomatic of dementia. Patients may seclude themselves from social interaction, have difficulty managing finances, may feel uncomfortable travelling alone, and may be in denial about their decline.
- Moderately Severe Decline: Day to day activities may become more difficult, such as dressing or preparing meals. It may be more difficult to remember their address or phone number.
- Severe Decline: In severe decline, there is very minimal independence. Basic counting, using the bathroom, delusions, and compulsions can be prominent at this stage. Patients may be unaware of their surroundings, they may forget close relative’s names or even faces, they may be prone to wandering, and they may become anxious or agitated easily.
- Very Severe Cognitive Decline: The final stage of decline involves a complete loss of independence. Even some basic cognitive functioning such as swallowing or speaking may be lost. They may not be able to connect to others, or their environment at all. Walking, eating, and using the bathroom may all be lost in this stage.
Caring for Someone with Alzheimer’s Disease and Dementia
Alzheimer’s and dementia are difficult for patients as well as for the people who love them. There are struggles faced by family, friends, and caregivers of someone who has been diagnosed with such a difficult disease. Whether you provide daily caregiving, participate in decision making, or simply care about a person with the disease, there are resources to help. The troubles faced by caregivers range from a knowledge on how to care for someone with dementia as an informal caregiver, to the emotional struggles of losing someone to this degenerative disease.
If you’re caring for someone with dementia or Alzheimer’s, there are some things you may want to understand in order to be the best caretaker you can be:
- Knowing your care options: Providing care yourself, in-home care, facility care, residential care, etc. are all options for your loved one who has dementia. Knowing the options is helpful as well as the costs that come with that care.
- Having a care plan: If you are caring for a patient with dementia, there are resources to help you with a care plan as a caregiver.
- Understanding the risks: Safety can be a big concern with night wandering, driving, falling, and abuse in a facility. Understanding these safety risks is important.
- Taking care classes: Care training resources are available if you’re helping to care for someone with dementia in any capacity.
- Understanding how to communicate: Communication can be lost quickly, so learning to communicate can help in the process of cognitive loss for you and your loved one living with dementia.
- Finding activities: Many activities can help with symptoms and quality of life for those living with dementia or Alzheimer’s.
- Knowing legal and end of life planning: With chronic conditions like dementia, it’s important to make arrangements and legal decisions as soon as possible, as difficult as it may be.
- Finding a support group: Finding support is so important. Losing someone to dementia or Alzheimer’s is extremely difficult, so finding resources to help is paramount for caregivers and loved ones.
Alzheimer’s and Dementia Resources
- Alzheimer’s Association
- Alzheimer’s Disease & Related Dementias – National Institute on Aging
- Alzheimer’s Foundation of America
- Dementia Society of America
- The Association for Frontotemporal degeneration
- Lewy Body Dementia Association
- Community Resource Finder – Alzheimer’s Association
After a diagnosis of Alzheimer’s or any form of dementia, it can be difficult to go through the steps needed to keep finances in order for the patient. It can be too difficult for some, and both patients and their loved ones may be in denial about the severity of the circumstances. However, it’s vital for someone to take control of the financial planning involved to keep the patient’s care a priority. Most of the time, initiating care for an Alzheimer’s or dementia patient involves organizing financial documents, taking a look into care costs, and evaluating their long-term care needs.
Organizing Financial Documents
Having issues managing finances is generally seen around the moderate decline stage of Alzheimer’s or dementia. However, every person is different. Some may see that aspect of cognitive function dip before or after this stage. For this reason, it’s important to start gathering financial documents as soon as possible. Ideally, it’s important to have these conversations while a patient is of sound mind, before dementia has progressed too far, so that all financial decisions are made with their preferences in mind, and all documents are collected with their help.
The first step in financial planning for someone with dementia is to get an idea of that person’s entire financial situation. This not only includes monthly income and bills, but also things like insurance, pensions, and bank information. Getting this information will vary depending on the cognitive standing of the patient experiencing dementia as well as your relationship with them and their understanding of the process. To begin, follow this checklist for financial documents to get organized in order to have a big picture of their finances.
- Monthly income information: Going through monthly income is a vital step in realizing how much the patient can afford in care.
- Stock and bond certificates: Finances aren’t just about income and bills, it’s also about investments. Looking into stocks and bonds will help to understand more of this person’s finances and if any of these need to be liquidated to pay for care.
- Social Security payment information: Social security can be a vital component of income for many seniors. It’s important to look into this payment information and understand the disability benefits.
- Retirement benefit summary: Gathering an entire retirement benefit summary will help to understand the benefits the patient has, as well as what they qualify for. The patient may have a few sources of retirement income you need to know about.
- Pension benefit summary: Does the patient have a pension plan? Does/did their spouse? Answering these questions will give you a better idea of this aspect in their overall income.
- Monthly bills: As with any budget, you’ll need to get an idea of all of their bills as well as their income.
- Outstanding bills: This might paint a more accurate picture of where they are with their disease. If they have any outstanding bills that need to be paid, or new bills that recently became outstanding, it may be a sign of their cognitive functions dwindling and will let you know if you need to step in with credit card use or other financial decisions.
- Insurance policies: Any insurance policies regarding health will be important here. From health insurance to long-term care insurance policies to life insurance, all of these policies will need to be gathered.
- Mortgage papers: Not only will mortgage papers be important in understanding payment obligations each month, it’s also helpful to know in case it’s beneficial for a patient to get out of a mortgage, or a reverse mortgage, in order to stay in long-term care.
- Deeds: Gather any property deeds in order to have an accurate idea of any assets.
- Bank and brokerage information: Gathering bank and brokerage information will be helpful in organizing all of the financials you can find including account information and balances.
Care Costs: What To Plan and Budget For
Care costs are inevitable when someone is diagnosed with Alzheimer’s or dementia. Though some care situations will vary, certain needs are universal. Through the use of the patient’s assets and financials, or financial assistance, family members or those advocating for them should have an idea of what can be afforded in terms of budgeting.
- Medical care: One of the aspects of care will include medical care. Prescription drugs, hospital visits, doctor visits, imaging, tests, and regular medical intervention will be needed for a patient living with dementia or Alzheimer’s. There will be many follow up visits, treatment, and medical equipment involved throughout the care process.
- Personal care supplies and home modifications: Personal care supplies and home modifications are needed in order to make life as independent as possible for as long as possible. These items include stools, grab bars, ramps, walkers, commodes, etc. Modifications are similar in need and may be required in order for the patient to get around in their home safely.
- Adult day care or in-home care services: Senior homes and retirement housing come in all shapes and sizes. Some retirement communities offer day care or in-home services instead of the traditional full time residential care option.
- Full-time residential care: Full-time, long-term residential care options can be extremely helpful for dementia patients in later stages especially. With so many safety concerns, it can be best to have medical professionals with them at all times. Some of these facilities specialize as Alzheimer’s and dementia care.
Assistance for Covering Costs of Care
Care costs aren’t cheap, so assistance in covering some of these costs is valuable. For patients with some financial backing (as discovered by going through the complete list of financial documents to be organized), paying for care on their own and with the assistance of medicare or other benefits can leave the patient and their family at ease. However, not all Alzheimer’s and dementia patients will have a strong financial backing to help.
Medical debt can be a burden in many ways, so it’s helpful to understand your assistance options, know your medical debt rights, and the resources available when finances are strained as a result of medical need. Through the the use of health care, medicare, life insurance, medicaid, veterans benefits, and state funded programs, patients can have financial assistance in getting the care they need.
Health Care Coverage
There are many different options under the umbrella of health care coverage. No matter what type of health insurance you have, chances are there is some sort of coverage for the medical costs associated with dementia and Alzheimer’s. However, knowing that for sure involves looking into the private insurance policies in place. If the patient doesn’t have insurance, it’s important to look into other assistance available as well as how to pay hospital bills without insurance and how to negotiate a repayment plan.
According to the Alzheimer’s Association, medicare should cover inpatient hospital care, doctor’s fees, some prescription drugs, some home care options, hospice, and wellness visits. If the patient qualifies for medicare, it’s important to apply for this assistance in order to get the most financial help for the care that will be needed.
Understanding the different types of life insurance policies can be confusing, but some life insurance policies can be used for patients who are still alive. For some, life insurance can be borrowed against to help pay for care. Some policies offer accelerated death benefits in which benefits can be paid if the insured person is not expected to live beyond the next six to 12 months due to a terminal diagnosis.
If a patient does not qualify for medicare, or qualifies for both medicare and medicaid, many aspects of care needed by patients with dementia may be covered. Medicaid does cover all or a portion of nursing home costs, which is a giant expenditure in terms of care costs for those with dementia or Alzheimer’s.
If the patient is a veteran, or the spouse of a veteran, there are benefits available that may be able to aid in cost for dementia and Alzheimer’s care. Benefits you receive as a veteran can be supplemental to private insurance. Discussing additional benefits as a veteran with the VA may provide even more support for care costs as some may qualify for help with in-home or assisted living care as well.
State Funded Programs
Each state has a different set of programs that are funded to help people in need. Looking into your own state and the help that might be available could be supplemental to any private insurance, veteran benefits, etc. that the patient already has.
Long Term Care Planning
Possibly one of the most costly aspects of care for Alzheimer’s and dementia patients is the long term care required for a patient living with any dementia related condition. Making long term care plans involves understanding the stage that the patient is in, as well as acknowledging that dementia is progressive and needs will change over time.
Having access to medicare and disability insurance like social security disability insurance (SSDI) is extremely valuable in terms of short term and long term care costs. Both benefits have attributes that help those living with dementia or Alzheimer’s and their long-term care needs. When considering long term care planning and the costs associated with it, having medicare or disability insurance will help make those care decisions easier.
Long Term Care Insurance
Having long term care insurance is a great way to cover the costs associated with a patient’s care throughout the many stages of disease progression. Unfortunately, once an individual is diagnosed with Alzheimer’s, they aren’t able to apply for long term care coverage. However, if the patient had it before diagnosis, it can be a great asset.
Financial planning and long term care are not the easiest processes. It’s time consuming, learning nuances can be confusing. Not knowing certain aspects of financial planning can leave a patient without the best care possible. In times like this, it can be helpful to have an outside planner or financial advisor help with the process to avoid any question of dishonesty or self-gain when making decisions for a patient’s finances.
Financial Planning Resources
- Alzheimer’s Association Legal and Financial Worksheet
- Alzheimer’s Association Financial Planning Resources
- Genworth Financial — Compare long term care costs across the United States
- Home modification information — Fisher Center for Alzheimer’s Research Foundation
Ideally, legal planning can begin at the earliest stages of dementia progression, or even before as a proactive precaution. Making sure the patient is able to make their own legal requests is ideal, though this is not always a possibility if an individual has progressed too far into dementia. Legal planning is there to create expectations of safety, decide on a power of attorney, to leave a will, create guidelines for guardianship, make decisions on assets, leave advanced directives, and to have say on finances and care.
Not only should the person who is diagnosed be a part of legal planning, so should their spouse, children, a lawyer, and close friends and family.
Legal competency is extremely relevant in dementia cases because of the impact it has on decision making, memory, and problem solving abilities. Deciding on a person’s legal competency will depend on the legal document as well as cognitive assessments by a doctor. Together, the patient, their lawyer, their doctor, and trusted family members will have a discussion about legal competency and advocating for the welfare of the patient.
Documents for Families and Patients to Prepare
Without prepared legal documents, certain decisions about care and end of life planning can’t be carried out. Each document has its own importance in protecting the patient, their wishes, their safety, and their estate. It’s also helpful for family members to have these documents prepared in order to make decisions easier and to help avoid conflict.
The loss of independence can be extremely difficult for those living with dementia or Alzheimer’s. A driving contract is one way to ease the transition once a patient goes from being able to drive, to losing the ability to do so safely. A contract will help the patient understand (when they are of sound mind) that they may eventually need to give up driving. It will also help to explain this in the future, reminding patient that they themself agreed to the stipulations.
Power of Attorney
When getting affairs in order, assigning a power of attorney is a vital step in the process. A power of attorney is someone designated as being responsible for a person’s wellbeing. However, as long as a person is of sound mind, they are the final word in their decision making. Assigning a power of attorney is a way to be sure your wishes are carried out just in case you’re unable to communicate them. This includes health care directives, financial decisions, and legal needs.
- General: A general power of attorney allows someone to act on a person’s behalf in their absence. A general power of attorney terminates when the person is incapacitated or deceased.
- Durable: A durable power of attorney allows someone to act on a person’s behalf even if they are incapacitated or deceased, a vital component in a situation involving dementia or Alzheimer’s.
Last Will and Testament
Part of the importance of estate planning has to do with creating a will and testament. This legal document will outline what an individual would like to do with their property, estate, and financials after death. This can be extremely difficult to go through in cases of patients with dementia or Alzheimer’s, but it’s a vital component. Creating this document as early as possible is paramount in the legal aspect of decision making for the patient and their family.
A guardian or conservator is a person appointed by a court to make the best possible decisions for someone who is unable to make those decisions for themselves. Guardians are there to make medical decisions, conservators are there to make financial decisions. These people are usually appointed if the patient had not assigned a general or durable power of attorney. The people appointed may be family members, friends, or an attorney.
A living trust is a legal document where your assets are placed into a trust for your benefit during your lifetime and then transferred to designated beneficiaries after your death. It’s similar to a will, except that it is private and tends to be distributed quicker due to it not having to go through court proceedings. It’s helpful for dementia or Alzheimer’s patients because a trustee can easily take control over it if a patient becomes incapacitated, which may happen long before a patient passes for those with dementia.
Living Will/ Advanced Directive
Where a last will and testament is a legal document outlining your wishes after death, a living will is a legal document detailing a person’s desires regarding their medical treatment in circumstances in which they are no longer able to express informed consent.
- Living will: This is where a patient can make their own decisions about their care, even after they are no longer able to in person. This is why a living will is important to create before the later stages of dementia or Alzheimer’s.
- Durable power of attorney for healthcare: A healthcare power of attorney document ensures that if you are not able to make medical decisions, the person of your choice is empowered to do so.
- Five Wishes: More than just an advance directive, Five Wishes brings a holistic approach to a living will by including an individual’s care and comfort choices. It provides a means to legally document your choices for medical treatment, comfort, and care wishes. This is an aspect of a living will that reminds us that those with dementia or Alzheimer’s are still people looking to be surrounded by the things they once loved, the people they may not remember anymore, and to be treated with dignity before death and after.
Legal Planning Resources
End of Life Planning
Eventually, everyone is going to pass on. For those who have been diagnosed with Alzheimer’s or another form of dementia, it’s important to start thinking about these things as soon as possible. Because of the progressive and degenerative nature of dementia, sometimes patients aren’t able to make these decisions in time. However, whether you’re a patient, or advocating for a patient, it’s important to make decisions in terms of end of life planning.
Physician Orders for Life Sustaining Treatment (POLST)
This is a conversation to have with a patient’s doctor. It’s a way to address end of life treatment wishes by filling out the forms required for a doctor to follow those wishes. An individual can specify if they want CPR or put on a breathing machine, for instance. Unlike a DNR or DNI, a POLST form extends to situations beyond not breathing or having a pulse, however. It’s a form created so that medical professionals keep with a patient’s beliefs and wishes during an emergency situation.
DNR or DNI orders are outlined in a POLST form. Do not resuscitate (DNR) or do not intubate (DNI) orders are specific to situations where a patient is not breathing, doesn’t have a pulse, or isn’t responsive. For some patients, it’s important to specify their DNR or DNI requests early on as many family members have a hard time with those decisions.
Hospice care is designed to make a patient comfortable in the final stages of terminal illness. Planning for hospice is important in making important decisions with a health care provider about quality of life, location of hospice care, and the importance of comfort.
Brain Autopsy and Brain Donation
For many types of dementia, a definitive diagnosis can’t be made until after death. Agreeing to an autopsy will help to provide a clear diagnosis and offer important research about Alzheimer’s and dementia for future patients. Because their may be cost, arrangements to be made, and such a small window of time for tissue to be viable, it’s important to make decisions about a brain autopsy or donation sooner rather than later.
Funeral and Burial Plans
There are a lot of things to be done when someone passes. If plans are made beforehand, it’s helpful for survivors to make decisions that their loved one would want. Though funeral arrangements can be expensive, know that there are resources to help or ways to plan for the expenses ahead of time. If the patient was a veteran, know that there may also be military resources available to help. It’s helpful to decide on a burial location as well as cremation, burial, etc. Consider the type of memorial service, the costs associated with arrangements, or even a charity mourners can donating to in the patient’s memory.
End of Life Planning Resources
- National Polst Paradigm
- Advanced Care Planning – National Hospice and Palliative Care Organization
- Alzheimer’s Association End of Life Planning Resources
Alzheimer’s and dementia are special medical cases that involve a fair amount of financial and legal planning in order for the patient to be cared for throughout the process of their diagnosis, care, and end of life plans. Unlike many other terminal cases, dementia can rob a person of their decision making abilities long before they pass on. For that reason, planning is best done long before a patient’s cognitive abilities come into question, though that’s not always possible.
Though Alzheimer’s and other types of dementia are extremely difficult illnesses, it’s important to remember that there are ways to ensure the patient is taken care of. Through financial planning and legal decision making, the patient and their support system can ensure the rest of their life is one filled with love, comfort, and dignity.