If you are a family caregiver for a loved one with dementia, you may already know full well how many challenges there are to overcome. From finding a health care provider to tackling financial and legal issues, it seems there is always a new challenge surfacing.
That’s why Alzheimers.net created this resource for family caregivers.
Steps for Planning for the Future for a Loved One With Dementia
Here are five initial steps that you can take to better plan for the future care of a loved one with dementia:
Step 1: An early diagnosis.
When a loved one begins struggling with memory loss, it’s time to start planning for a visit to the healthcare provider. The earlier the diagnosis, the better the outcome for measures that may impact the disease, such as Alzheimer’s medications for people with dementia. The primary health care provider may suggest a specialist or make a referral to a memory assessment clinic.
Here are the items to put on your checklist to ensure your loved one has a thorough dementia evaluation:
- A physical exam (to evaluate for organic disorders that could cause dementia).
- A psychiatric evaluation to assess for mental illness (such as major depression) that can mimic dementia.
- A thorough cognitive evaluation.
- Family history to gather detailed information about cognitive changes observed by the person with memory problems and the family members.
- Lab testing.
- Find a local memory assessment clinic.
- Read an article about early diagnosis called, “Better Alzheimer’s Prevention With Early Detection.”
Why early diagnosis is important:
- It can give people with dementia and their family members time to make vital financial and legal decisions
- It can help people with dementia and their family members better plan and prepare
- It can open the door for early treatment, which has a higher chance of delaying the progression of the disease, than when diagnosis occurs in the late stages of dementia
- It can provide time to consider a course of action for choosing a structured living environment
- It can rule out any cause of cognitive changes that may be reversible
Step 2: Educate yourself and others.
Education is an important aspect of early diagnosis of any illness, but particularly when it comes to dementia. Dementia involves several stages and each stage brings with it unique challenges and symptoms.
- Do a Google search to find local resources.
- Plan to be present at all health care provider screenings and visits (ask questions).
- Read through books, brochures and websites on dementia care.
- Learn about all aspects of dementia and care.
- Learn more about dementia resources.
- Learn about the signs and symptoms of dementia.
Why education is important:
Familiarizing yourself and others in the family about what to expect may help with the following:
- It can prevent fear and stress of the unknown
- It can prevent unexpected events that caregivers are not well equipped to deal with
- It can provide information on effective caregiver skills to apply during each stage of dementia
Step 3: Establish a support system.
Perhaps the biggest mistake you can make as a dementia caregiver is to try to do everything yourself. The incidence of caregivers who develop stress-related illnesses is very high. Establishing a support network and asking for help from others may be the most important steps in the planning process.
- Assign those who are not able to help with direct care tasks with jobs such as running errands, housework or lawn care.
- Find an online platform for updating other team members with.
- Find an online support group to seek out support, even when you can’t leave the house due to caregiving obligations.
- Locate a local support group in your area and attend meetings as often as possible.
- Make a list of family members and friends who are willing to help.
- Organize monthly meetings with family members and close friends involved in caregiving to discuss the status of the person with dementia, share ideas on what works and what doesn’t work and create new “To Do” lists for sharing responsibilities.
- Access a 24/7 HELPLINE from the Alzheimer’s Association: 800-272-3900.
- Access 10 apps that help with family caregiving.
- Call the Alzheimer’s helpline, a 24-hour phone or email crisis support line.
- Locate a caregiver support group in your local geographic area.
- Set up an app for caregivers for sharing information with others.
Why establishing a support system is important:
- It will allow the primary caregivers to get much-needed time off
- It will help caregivers stay mentally and physically healthier, so they can see their caregiving job through all stages of the disease
- It will help lower stress when caregiving tasks seem insurmountable
Step 4: Form a financial and legal plan.
Early financial and legal planning is a very important step for family caregivers and other family members. It allows the person with dementia to be involved before the disease interferes with decision-making abilities.
- Always incorporate the person with dementia’s verbalized wants and needs and honor them whenever possible.
- Complete a Health Care Power of Attorney to appoint a family member or friend legally responsible for health-related decisions when the person with dementia is no longer capable.
- Consult with professionals (such as attorneys or financial planners) whenever possible.
- Create a plan for covering financial and medical needs, apply for Medicare, Social Security and VA benefits.
- Decide who will manage the finances and who will take on the legal responsibilities (such as establishing a Living Will or Power of Attorney).
- Hold a family meeting to make financial and legal decisions.
- Identify future needs.
- If there are disagreements, commit to working through them without blaming, negativity or chaos.
- Information on planning ahead for legal matters.
- Information on Financial Planning.
- Financial Resource Guide for Dementia Care.
Why forming a financial and legal plan is important:
- Creating a plan early on allows the person with dementia to have input into who should be in control of financial and legal issues down the road
- Creating a plan early on reduces the stress of trying to make decisions in the heat of emotional reactions (to the many challenges of caring for a person with a degenerative disease)
- Having the legal paperwork in place early on can help the family avoid legal problems down the road
Step 5: Make a caregiving plan.
Creating a caregiving plan for a person with dementia is a long-term process. The plan must be flexible to be able to change as the person with dementia becomes more dependent on others for help.
Create a plan for the following (depending on your senior loved one’s needs):
- Create a daily activities calendar.
- Create a meal planning calendar (including the person to do the shopping).
- Create a safety plan for fall prevention and preventing wandering.
- Create a schedule of medications and medical treatments (if applicable).
- Home cleaning and maintenance services and yard work.
- Choosing an adult day center, assisted living care or memory care center.
- Knowing when it’s time to provide more structured care with your loved one with dementia.
- Planning daily activities for a person with dementia.
Why it’s important to make a caregiving plan:
- Each person on the caregiving team will know what’s expected
- To create consistency and stability for the person with dementia
- To have an ongoing plan that addresses current needs
The last step in the planning process for a dementia caregiver is to give yourself credit. You’ve gone the extra mile to educate yourself and create a plan, anticipating any issues before they occur.
That’s something you can feel good about!
What other suggestions do you have for planning for the future for a loved one with dementia? We’d like to hear your tips in the comments below.