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After the Dementia Diagnosis: 10 Steps for Moving Forward

If a loved one has received a dementia diagnosis, you may be feeling overwhelmed – and uncertain – as to which steps to take next.

It’s important to understand there are several resources available to provide guidance. It can also be helpful to realize you are not alone. A recent study estimates that almost 10% of U.S. adults aged 65 and older have been diagnosed with dementia. Along with increasing longevity, the number of those living with dementia is projected to grow significantly.

These steps are geared toward the family members of someone recently diagnosed with dementia.

The initial feelings after receiving that dementia diagnosis can range from fear to denial and maybe a little bit of relief.

There is no right or wrong way to feel about a diagnosis. Being prepared and knowing what to expect can make a big difference. We’ve shared 10 steps to help families begin to move forward after dementia diagnosis

1. Become educated

Learn as much as possible about dementia, including the different stages of the disease and recommendations for how best to prepare. Understanding what to expect and making plans to meet any challenges can go a long way in helping the individual feel less powerless and gain back control over personal choices. To learn more about the basics of dementia and some resources, check out a few of our blogs: Alzheimer’s vs. Normal Aging and What is Memory Care?

2. Work with the medical team

A primary source of information and partner in this journey is the medical or care team. It’s a good idea to make a continuing list of questions to discuss at the next visits. These might include how the disease will progress, what treatment options or medications may be available and whether they can recommend services or resources.

3. Prepare for changes and adaptations

Many people diagnosed with dementia remain at home, especially in the earlier stages. Assess the home they live in for safety and security as well as who will provide the primary care when needed. It is essential that the individual with dementia maintain a healthy diet and remain active – both physically and socially. Create a plan that will contribute to a high-quality life. Social isolation can make a dementia diagnosis much more challenging. Learn more in our blog, The Difference between Loneliness and Social Isolation.

4. Share the diagnosis with close family and friends

An initial reaction for many after receiving a dementia diagnosis is to keep the information private. However, sharing this news with trusted family and friends can provide a network of support. Being a caregiver for someone with dementia can be an incredibly lonely experience if you keep all of your emotions, fears, thoughts and stresses to yourself. Surround yourself with a reliable and caring group of friends and family to make things a little easier and lighten the load a little bit.

5. Plan for assistance with day-to-day tasks

After a dementia diagnosis, it’s a good idea to consider the type of help that will be needed in the future. Consider what services or agencies are available in the area. Research the options of food service delivery, transportation and hiring someone to help with personal care. Early on in the dementia diagnosis is a great opportunity to consider assisted living. Check out our blog, When to Move to Memory Care – The Window of Opportunity, to learn more about the benefits of moving to assisted living early on in the dementia journey.

6. Assess the home’s safety and arrange for repairs or renovation

This is a good time to walk through the home and take note of any accessibility challenges or any upgrades required for safety. Are the bathrooms and kitchens age-friendly? Consider how to simplify maintaining the household and decrease the risk of falling, wandering or other safety issues. Weigh the costs of home repairs/improvements with the cost of an already established safe apartment in assisted living. You may be surprised with how much you spend making an existing home safe compared to moving into assisted living.

7. Explore preferred long-term care choices

Discuss the individual’s preferences for future care and any options such as a family member providing the earlier primary care. Examine the possibility of bringing in additional memory support and respite. Visit a memory care community to understand the benefits they offer – not only for physical and cognitive care but opportunities to improve quality of life.

8. Determine the costs of care

As a progressive disease, the level of care needed will also increase over time. You’ll want to consider budgeting for medical treatment, equipment, safety modifications for the home, prescription drugs, adult day services and the fees for home or health care and the cost of a memory care community. For an accurate budget, talk with agencies and communities directly instead of estimating fees, which can vary widely.

9. Discuss legal planning

Making sure legal affairs are in order as soon as possible after a dementia diagnosis not only feels empowering but ensures the individual’s wishes will be known. Review existing documents with an elder law attorney and determine if updates are required or if there are any forms missing, including power of attorney, advanced directives, trusts and wills.

10. Complete financial planning

Create a list of assets and debts as well as a budget based on the costs of future care and daily expenses. Discover what resources may be available to fund these budget items. Review if the individual is eligible for any government benefits and whether there are insurance policies, retirement pensions, personal savings and investments.

A dementia diagnosis is the beginning of a longer journey with memory care, we hope these 10 steps provide solid next steps and a little clarity about what to do after you hear the word dementia.

Looking for a Northbridge memory care community near you? Click here to see our memory care locations throughout New England.