Planning for Alzheimer’s Care

Legal and financial planning should begin soon after a diagnosis [for Alzheimer’s] has been made. The earlier you explore care arrangements, the most likely you are to find options that you and your loved one prefer.  

Initial planning for Alzheimer’s care

At first, a diagnosis of Alzheimer’s disease or another dementia may seem like too much to bear.  With Alzheimer’s you are faced with the following:

  • Your loved one has an incurable illness that will cause gradual deterioration over many years.
  • The person may remain physically healthy for several years while developing more and more problems with memory, thinking, communication, emotions and behavior.
  • Eventually the Alzheimer’s patient will no longer recognize family or friends and will lose control of bodily functions.

This is shocking news, and many people will be in a state of denial or disbelief initially.  You may feel anxious, depressed or overwhelmed.  A brief denial period is O.K., but it’s important to nudge yourself into reality. You have a lot to learn, and you must make plans for the person’s care:

  • At first, Alzheimer’s care might involve just a little extra effort to help the person with daily activities.
  • Caregiving becomes more time-consuming and complex as symptoms progress and behavior problems develop.
  • Eventually, around-the-clock availability will be required to handle the person’s most basic needs, then to provide end-of-life care.

For some caregivers, there is plenty of family support, with several relatives in the same household or living nearby.  The planning and the actual work of Alzheimer’s care can be shared.  But there are many older individuals or couples who have no family nearby, or whose family members can’t be involved: it’s only the patient’s closest loved one who can take on these responsibilities.  Regardless of your family situation, it’s important to know that many people have traveled this road before you.  Guidelines and support are available through brochures, books, websites, workshops, and community agencies.  Even if you are a lone caregiver, you can start to think of yourself as the care coordinator who is working with a team–an elder care network.  A key team member is the doctor who made the diagnosis.  You can get information and referrals at the doctor’s office to find professional help with developing a plan of care.

Learning about Alzheimer’s disease

It’s important to learn all you can about Alzheimer’s and identify the main issues so you can have a better sense of the services you need.  You can get a good overview of the progression of the disease by reading Helpguide’s Alzheimer’s Symptoms and Stages.

With the help of the physician, you’ve begun developing a picture of what needs to be done to help the care recipient function as independently as possible.

Now is the time to have discussions about the future with the person who has been diagnosed.  You can find out about his or her concerns and wishes, while still mentally competent to participate in the planning process.  If possible, share what you are learning with family and friends.  They may have useful ideas and suggestions, and you’ll find out the extent to which others will participate in the patient’s care.  Once you’ve begun your own geriatric assessment with those close to you, it’s time to consult the experts.

Learning the skills of providing care for someone with Alzheimer’s or another progressive dementia

With all serious illnesses, there are many issues that caregivers will have in common.  Perhaps the most important is self-care: maintaining one’s own health and well-being while caring for another.  Learning about the wide range of skills needed is an essential part of preparing yourself for the years ahead.  Helpguide’s articles in the Caregiver Support section are recommended reading.

Caring for an elder with dementia has its own unique challenges and can be particularly frustrating and exhausting.  It’s often more difficult for the caregiver than for the patient.  Many patients with different kinds of dementia have similar behaviors and requirements to Alzheimer’s patients, so the caregiving issues are similar.  While we focus on Alzheimer’s disease here, many of the suggestions do apply to other kinds of dementia.  The caregiver must arrange for or provide both health care and social care. Some aspects of dementia require medical treatment or intervention. Other aspects require helping with the activities of daily living, plus social interaction. The caregiver must co-ordinate care among different kinds of caregivers, as well as provide some or most of the maintenance and social care.

The important caregiving domains to learn about are:

  • Long-range planning for legal and financial matters
  • Planning for patient care and end of life issues
  • Communication with the patient
  • Medical management of symptoms
  • Maintaining the patient’s sense of well-being: safety, socializing, fun
  • Helping with the activities of daily living, such as bathing and toileting
  • Managing troublesome behaviors such as wandering or aggressiveness

These major aspects of caregiving overlap and are explored throughout the Alzheimer’s Care section of this series.  We start with long-range planning because it’s the patient’s wishes and desires that will form the basis for future care.  It’s during this early stage of Alzheimer’s disease that the patient will be most able to articulate how they want the many difficult and complex issues handled.

Legal and financial issues to consider during care planning

Many aspects of care planning can be upsetting or painful to discuss.  During end of life care, does the patient want be on life support systems such as a feeding tube or breathing machine?  For funeral plans, does the patient want cremation or another arrangement?  It’s common knowledge that with aging and health problems it’s important to discuss these matters, but many of us have a hard time actually doing it.  If you haven’t had such discussions, that’s all the more reason to seek out services of a professional who can help identify the issues and facilitate talking openly about them.

Legal and financial issues of caring for someone with Alzheimer’s include the following:

  • Evaluate income and assets to determine what kinds of care and services will be affordable.  The patient’s own resources may not cover all expenses and the caregiver may not be able to keep a paying job outside the home with the amount of elder care that is required.  You may be eligible for government benefits that supplement your income. 
  • Decide who will handle finances when the patient can no longer do so.  This could begin when the patient becomes confused about paying the bills.  A legal document sometimes called a Power of Attorney can assign responsibility for money management to the person the patient has chosen.
  • Review your health insurance coverage, long-term-care insurance coverage, and eligibility for government benefits, and then discuss long-term-care options, such as in-home care versus an assisted living facility or nursing home. 
  • Learn about tax breaks for caregivers:  in the U.S. that could include deductions for the dependent elder’s medical expenses, transportation to medical care, other expenses of care at home or in an institution, and more.
  • Prepare a will so that the patient’s wishes can be honored when it comes to distribution of any assets or income, and funeral arrangements.
  • Discuss and then formalize wishes for end-of-life care in legal documents.  This can include whether or not the patient wants to be on life support and designating who will make health-care decisions when the patient becomes unable to do so.  See details in Helpguide’s Advance Health Care Directives: End-of-Life Choices—Make Your Wishes Known!

Communicating effectively with an Alzheimer’s patient who is in denial about their condition

Hopefully, the emotionally difficult discussions around legal and financial aspects will have been handled in a sensitive manner while the patient has the mental clarity to participate fully.  But with cognitive decline new issues will arise that require new approaches–different ways of communicating.  In mid-stage Alzheimer’s, as bizarre behaviors develop, unique challenges will arise for having effective interactions with the patient, as described later in Alzheimer’s Care: Managing Behavior Problems.  In early-stage Alzheimer’s, communication problems may begin when the patient in cognitive decline thinks that they are capable of doing activities that are not safe for them to do, such as cooking or driving.  Other activities may not pose safety issues but still be problematic, such as handling money with poor judgment or compromised math skills.  Some suggestions for helping the patient in denial are:

  • Enlist medical personnel to talk to the Alzheimer’s patient about not attempting the activities. Often, the person will listen to an outside authority, but not to family members.
  • Prevent the activity that is unsafe. For example, park the car in a place that is out of sight. Hide the car keys. Remove the handles that turn on the stove.
  • Install alarms or disabling devices on unsafe objects. For instance, a car mechanic can install a hidden switch that keeps the car’s fuel line disconnected.
  • Be persistent and consistent with your communications to the Alzheimer’s patient. Tell them that they have a memory problem and cannot engage in certain activities.
  • Take over certain activities for the patient, such as driving them places, paying their bills, cooking for them, or giving them their medications.

Important caregiver tasks to slow the progression of Alzheimer’s disease, and make accommodations for failing senses

You can do a number of things to solve problems, relieve symptoms, and accommodate for the Alzheimer’s patient’s disabilities.

Important Caregiver Tasks for the Alzheimer’s Patient

Task

Details

Keep a record of significant changes in symptoms or behavior.  
Consult with medical and mental health experts about your concerns.  
Be an advocate for the patient during doctor’s visits. Bringing a list of problems with you and get all questions answered.
Get treatment for any aspects of the elder’s behavior that are treatable, such as depression or agitation. The treatment may combine medicine, group therapy, and activities.
Implement strategies that may slow progression of the disease, deciding what fits with the patient’s needs at each stage of the disease. See Helpguide’s Preventing and Slowing Alzheimer’s.
Anticipate sensory and communication difficulties. If decreased visual acuity is becoming a problem, provide brighter lighting.
In areas that do not need to be well lit, reduce glare for a more soothing atmosphere.
If there’s a hearing problem, speak louder so the elder hears you better.
Be patient, slow, simple, and positive when communicating.  Adapt your language and style to the patient’s level of understanding.
Find ways to communicate and share good times. This can give the Alzheimer’s patient a sense of security and comfort.
Medications may help with this when mood problems are severe.  
Create a safe environment in the home and maintain a good quality of life, even as the deficits become greater. See Caring for a Person with Alzheimer’s Disease or Another Dementia.

 

To learn more: Related Helpguide Articles

Helpguide’s series on Alzheimer’s

Helpguide’s series for Alzheimer’s caregivers:

References and resources for planning for Alzheimer’s care

General information about planning for Alzheimer’s care Planning Ahead for the Care

Planning Ahead for the Care – Has summaries and guidelines in PDF-Format brochures with links to other helpful sites on topics such as: financial and legal issues, tax planning, and living arrangements. (Alzheimer’s Association)

After the Diagnosis – Many topics addressed in separate articles include getting support, legal/financial planning, treatment, remaining independent, and more. (Alzheimer’s Society)

State and Federal Assistance Programs – Provides anonymous online forms you can fill out to match the elder’s needs with financial aid programs. (National Council on Aging)

Talking With Aging Parents About Death – How to approach elderly family members to talk about their death, including a set of frequently asked questions with answers. (Elder Care Online)

Home Safety Room-By-Room – Has a detailed list of ways to make the home environment safe for the Alzheimer’s patient. (ADEAR: Alzheimer’s Disease Education & Referral Center)

A Practical Guide to Alzheimer’s, Dementia, and Driving – Discusses the warning signs for restricting driving, coping with the transition from driver to passenger, and family and caregiver aspects of the decision. (The Hartford)

Caring for someone with dementia: Explaining to children – A sensitive article about how to help children to cope with their loved one’s Alzheimer’s Disease. (Alzheimer’s Society in the UK)

Talking to Children and Teens – Offers guidance about how to educate children and teens about a loved one with Alzheimer’s. This article also suggests ways for children and teens to adjust to life with a relative who has Alzheimer’s Disease. (Alzheimer’s Association)

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