Alzheimer’s and other types of dementia can be extremely difficult to manage – not only for the person diagnosed with the condition but also for the family members and their loved ones. Family members typically take on the caregiver role which often becomes all-consuming and overwhelming and impacts their ability to best care for their loved ones and themselves. Having a long-term care plan in place and hiring a care manager can help make the process easier when having to make decisions on who and what your loved one needs.
What is Dementia?
Alzheimer’s and dementia are often confused as the same thing – but they are not. Dementia is a neurological disorder which causes difficulties with memory, language, problem-solving and thinking, and changes in mood or behavior. While not a specific disease, dementia describes a group of symptoms affecting memory, thinking and social abilities so severely that it impacts a person’s day-to-day activities. Some people with dementia may get lost while driving or may forget to pay the bills. Dementia may be caused by Alzheimer’s or other conditions such as loss of oxygen to the brain as in a stroke. The symptoms of dementia vary according to the cause but some common signs include:
- Memory loss
- Difficulty in finding words to communicate
- Loss of peripheral vision
- Lack of reasoning or judgment
- Inability to focus or pay attention
- Gets lost easily
- Confusion about the time or place
- Misplaces things easily
Psychological changes of dementia include:
- Hallucinations (hearing, seeing, feeling something that isn’t there)
- Changes in personality or behavior
- Delusion or Paranoia (a false idea or firmly held belief in things not real)
What is Alzheimer’s disease?
Alzheimer’s is the most common form of dementia and affects over 5 million Americans. The condition is most common among individuals aged 65 and above. However, a small percentage of individuals may have early onset Alzheimer’s in their 40s or 50s. The disorder usually progresses slowly in about eight to ten years. The cognitive ability of the person slowly decreases while the parts of the brain that control memory, judgment, and language abilities stop working properly, causing a person to have trouble remembering, learning new things, concentrating, or making decisions that affect their everyday life. In later stages, Alzheimer’s may even impair the person’s ability to speak entirely which is known as mutism.
Proper planning for long-term care should be done sooner than later in order to ensure that you, your loved ones, family and caregivers know how best to care for and financially plan for someone who has Alzheimer’s or other form of dementia.
How do I plan for long-term care?
Legal and medical experts suggest that those who have been diagnosed with a serious condition such as Alzheimer’s update and assess their health and financial care arrangements as soon as possible upon diagnosis. If the person is diagnosed with early-stage Alzheimer’s and still has strong cognitive abilities, he or she should be involved in the decision-making process. Some questions to consider when making preparations for your loved ones are:
- Who will make health care and financial decisions for the person?
- How will care requirements be fulfilled?
- Where will the person live?
Alzheimer’s patients gradually require total assistance in their regular activities. Nighttime behaviors also sometimes make it hard for the caregivers to cope with. Additional help such as in-home help (nurse, assistant) or another family member sharing care duties can be of immense aid. But sometimes the need to move the patient to a facility that has a qualified memory care unit is the best choice. Patients can be placed in:
- A nursing home – provides help with regular activities as well as provides medical care. Nurses and qualified physicians are always on the premises as well as a physical therapist and occupational therapist.
- Assisted living facilities – these facilities have staff available 24 hours a day and help patients with regular day-to-day activities.
- Board and Care Homes – provides seniors with the same services available in assisted living communities, but are regular houses in residential neighborhoods equipped to care for a small number of residents.
A “living will” or advance health care directive specifies the care a person wants in the future when they are unable to make decisions for themselves. A power of attorney for health care, also called a health care surrogate, is an appointed person designated to make decisions on their behalf when the individual is unable to do so. Powers of attorney can be established and to keep health care decisions and financial matters handled separately as desired by the individual.
Who will pay for long-term care?
Long-term care can be expensive. Due to the rising cost of health care and care management facilities, many individuals may only have so many resources available to cover care costs and the families may not be able to pay for all of the care needed for their loved one. Rather than risk the family’s financial standing, it’s best to work with a professional to determine how best to pay for long-term care. It’s often a combination of personal financing, insurance and government programs including the following.
Government health care programs:
- Medicare: For people aged 65 and above receiving Social Security, this Federal health insurance program helps with the cost of health care, but does not cover all medical expenses or the cost of most long-term care. Those under 65 with certain disabilities can also qualify for Medicare.
- Medicaid/Medi-Cal: Low-cost health coverage for low-income individuals including families with children, seniors, persons with disabilities, foster care, pregnant women, and low income people with specific diseases such as tuberculosis, breast cancer or HIV/AIDS. Jointly run by the Federal and State government, Medi-Cal (California’s version of Medicaid) is designed – among other things – to help seniors pay for long term medical care. Costs of long-term care facilities that are deemed medically necessary by a physician are covered under Medi-Cal.
The service allows individuals to borrow money from the insurance policy’s cash value or take a loan from part of the policy.
Long-term care insurance:
Long-term care insurance policies pay the policyholders a regular amount for services that help them in their daily lives such as bathing, eating, dressing, etc.
Who should be on a long-term care team?
Talking about long-term care may be the elephant in the room that nobody wants to discuss, but by working with qualified resources and getting support needed, you can navigate the options and make the right choices that best suit your loved one’s needs and care requirements.
Seeking help during crucial times can help ease the physical and emotional burden from the family. A care team should include family members, friends, and other members of the community. Professionals such as a qualified care manager that handles dementia and memory care is also very important to include as part of your care team. You can select a decision maker from the group to help you make the right decision at the right times.
Why hire a Care Manager?
Complex issues arise when caring for someone with Alzheimer’s or dementia and due to the high emotion and stress involved, a care manager can provide extra guidance and help families and their loved ones cope.
A care manager provides a wide range of services. They serve as a liaison with the caregivers, families and loved ones to ensure the patient is receiving the proper care. They act as an advocate for the patient as well as the family and helps in making decisions related to aging, finds the right resources, and helps manage stress. A care manager also provides assistance in coordinating proper care whether at home or at a facility.
When choosing a care manager it is important that they be experienced in dealing with your specific needs and that they’re easily accessible. Their care plan should include frequent visits to the location of the person under care and ongoing visits with the patient to ensure that care plans are being followed and strong, healthy relationships are being developed.
Care manager services should be factored into the long-term care plan in order to have the support needed to manage the care of a loved one with dementia or Alzheimer’s. Care management services are generally not covered by Medicare or Medicaid. However, care managers can provide a general cost of services to find the best way to support the emotional, physical, social and healthcare needs of your loved one.
Caring for someone with Alzheimer’s and conditions of dementia should not be taken lightly nor left up to just anyone to manage. It requires consistent attention and assurance that the medical and day-to-day care given is in the patient’s best interest.
Remember, you are not in this alone; there are many who are in the same situation. Planning today for long-term care and understanding the nature of dementia and Alzheimer’s and the special care required can help you through the challenging times. And getting the right members together on your care team will provide you with the help and support that you need.
Lauren Spiglanin is CEO of Family Connect Care and a leading authority in care management, specializing in helping people challenged by Alzheimer’s and dementia. She has been providing caregivers with peace of mind and advocacy for their loved ones since 2009. She is a Certified Gerontologist (UC Davis) and member of the National Association of Professional Geriatric Care Managers. Questions for Lauren? Ask here.