Planning Ahead after a Diagnosis of Dementia

doctor with male patient


April 16 is National Healthcare Decisions Day. It is meant to draw attention to the importance of planning ahead for your end-of-life care. This is particularly important if you or a loved one has received a diagnosis of Alzheimer’s of other form of dementia.

As there is no cure for Alzheimer’s or most other types of dementia, there will almost certainly come a time when the person with the diagnosis will no longer be able to make decisions for him/herself. The first step in preparing for the future that includes dementia is to establish some guidelines for care and financial decisions while the person can still articulate their wishes. Here are some things you will need to consider:

Appointing someone to serve as power of attorney

Sit down with your family – including the person who received the diagnosis – to decide who should be charged with the ability to make medical and/or financial decisions on the person’s behalf if and when the time comes when they are no longer able to do so. In Massachusetts, there are several types of Power of Attorney documents. Generally speaking, there is one form to appoint someone to handle your financial decisions (most commonly a Durable Power of Attorney) and another form to appoint someone to handle healthcare decisions (a Health Care Proxy). In each case, you choose a person you trust to serve as your agent in the event you are no longer to make these decisions for yourself. This can be the same person or two separate individuals.

Determine who is able to provide care

If the spouse is still alive and healthy, it’s likely he/she will become the primary caregiver. But caregiving is a highly demanding role and requires the assistance of more than one person. An aging life care professional (care manager) can provide a needs assessment and create a Plan of Care. Once that plan is in place, you can decide who is available to provide care. If no family members are available, a care manager can provide recommendations for home care companies who can help provide assistance.

Investigate alternate living options

Dementia is a progressive disease, meaning the symptoms will continue to worsen during the life of the disease. Often, this means keeping the person in the home is no longer feasible. Take the time now to investigate senior living communities in the area to discover which ones offer memory care. A care manager can help you choose the ones that will best meet your loved one’s needs. Take your loved one with you to keep them involved. Knowing they still have some control over their future will help them cope.

In addition to making decisions about future care, here are some tips to remember to help you create a comfortable environment for your loved one as the disease progresses:

Develop a routine

As the disease progresses, anything new and strange may appear threatening to someone with memory loss. People with dementia tend to thrive on familiarity. It helps ground them and make sense out of what may be becoming a more confusing world. When someone with memory loss recognizes something – like the morning newspaper, a walk to the park, or sitting down to watch a favorite TV show – the more they understand the world. A routine also makes caregiving easier.

Learn how to communicate

Clear communication is often one of the first casualties of dementia. The first rule here is to enter their reality. If they say, “I’m so excited about Sarah’s wedding” when the event happened 30 years ago, ask them to share their favorite memories of Sarah. Many people with dementia still retain long-term memories and reminiscing is a good way to communicate. Don’t ever correct them or try to bring them into reality, as this can cause frustration. When talking with your loved one, always look them in eye and call them by name. Speak slowly and use short, simple sentences. Ask questions that can be answered “yes” or “no.” Also, learn to read their body language. For instance, if they’re fidgeting, it may mean they need to use the restroom.

Practice compassion

Caring for a person with dementia can be challenging. Being asked the same question several times in a short amount of time can become tiring. Always remember that your loved one isn’t doing any of this on purpose and if they knew what was going on, they would most likely be embarrassed. Look for the person who you knew and loved before the disease and help that person make the best of a challenging situation.