How to Deal with a Dementia Diagnosis


The father of one of my staff members (let’s call her “Cara”) has had Parkinson’s disease since she graduated from college twenty years ago. Recently, Cara got the call she had been dreading for years – that now, her dad also has dementia. When Cara hears devastating news, she is usually an emotional basket case. This time, it was different

News of the diagnosis hit Cara hard, but she didn’t get emotional about it. She had prepared herself for a long time for it, and she had to keep her calm for her children. She knew dementia was genetic for her father and she knew very well that it’s often par for the course with Parkinson’s (an estimated 50 to 80% of those with Parkinson’s eventually experience dementia as their disease progresses). Emotional, she wasn’t. But, she still felt helpless living 600 miles away, having tons of responsibilities of her own, and simply not knowing how she could help her mother, who was his primary caregiver.

Another thing that concerns Cara is how the news will affect her father, if he does not know already which she believes is the case. Her father saw his mother suffer from dementia, and one of his brothers and his aunt has it also. He has suffered so much with Parkinson’s for all these years, but was still a trivia whiz and had his wits about him. How will he handle it when he finds out about his devastating diagnosis?

What we know about dementia

Unfortunately, there is no course in school telling us what to do and how to be helpful when an aging parent develops dementia, or an easy way for someone with dementia to handle the news of their diagnosis. What we do know, however, is that dementia is a debilitating disease. We don’t have a cure and we don’t know the cause, but we have good ideas about how to stave it off the symptoms for as long as possible. There is no medication that changes the overall course of the disease, though some medications provide temporary improvement in short term memory.

When a loved one finds out he or she has dementia

Reactions to a diagnosis of dementia can vary from relief to a mixture of fear, anger, or denial. Helping people come to terms with their diagnosis, to make decisions and plan ahead, is critical in supporting them to live well with dementia.

Often, things your loved one once did easily will become increasingly difficult, such as maintaining a schedule or managing money. Accepting changes in his abilities and adapting new coping skills will help him restore balance to his life and give him a sense of accomplishment in his abilities as he continues to live with the disease.

Support is out there to help people come to grips with their circumstances, fears, beliefs, and hopes. Remember, when it comes to support, different things are helpful for different people. Knowing the person, their history and interests, and understanding how dementia is affecting their life are crucial if the support offered is to be genuinely helpful. Please visit the Alzheimer’s Association Website for tips, suggestions, and details to help your father cope with his diagnosis. And for more general information on Parkinson’s type dementia, you can click here and here.

How You Can Help

Similar to Cara, what if you live far away from a loved one with dementia and you really want to help? Here are some things you can do to offer help to your family:

Pitch in: Make sure your loved one who is the primary caregiver does not have to carry the caregiver burden all by herself. It’s a heavy load. Give her some encouragement, appreciation, or relieve her yourself when you can.

Take on a task long term: If you cannot get on a plane or drive long distances to visit often enough, then offer your help in other ways. Managing property, bookkeeping, communicating with essential people, doing banking, getting prescription refills and other chores can often be done online or by phone. You can provide significant help even if you live far away.

Avoid criticizing the primary caregiver, no matter what. He or she may not be perfect at the job, but there is nothing more disheartening to a caregiver in the daily grind of the job than to hear fault-finding from a child or a sibling who isn’t doing the work. If you think more help is needed, offer to give it, pay for it, or find it.

Be a good listener. If another family member is on site and doing the hard work of day-to-day caregiving, you can check in on a regular basis and let her vent. It costs you nothing, and requires no more than a patient attitude and the desire to show your love and support by asking how things are going. This can be more helpful than you realize. Watching a parent in decline is sad. Talking about the emotions involved can relieve everyone’s stress.

Visit your loved one: As the disease progresses, your loved one may not know you by name or even know that you’re related, but he or she feels and knows the energy of the people that are closest, and can always feel your love, because love, like everything else in our universe, is energy, and we are all here on our earthly journey to give and experience love in all its forms. (Sorry if this sounds a little too “woo-woo” or “new agey” for some of you, but you’ll have to remember that in addition to being a Certified Elder Law Attorney, I’m also a Reiki Master and founder of a non-profit organization that provides Reiki to Elders, and I know first-hand that the world we live in – and everything that exists — is made of energy.)

Be sure the legal paperwork is in order: Before too much time passes, your loved one may not be competent to sign anything. Take the lead and find out if his legal documents, such as his Financial Power of Attorney, Will, Trust, and advance medical directive, are up to date. If not, be sure to visit an experienced Elder Law Attorney, such as myself, as soon as possible.

Planning for Long-Term Care

If you have a loved one with dementia, it is likely that he or she will eventually need continuous licensed nursing care in skilled care facility. Nursing homes in the DC Metro area cost between $10,000- $14,000 a month, which is a catastrophic amount for most of us. With proper planning, Medicaid will pay for most or all of the nursing home expenses.

In cases where a family member is in the early stages of dementia or Alzheimer’s disease, early planning is especially important. The family member needs to make decisions about financial matters while he or she still has the mental capacity to do so.

Here at the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. Please call us as soon as possible to make an appointment for a no-cost consultation:

Fairfax Elder Law: 703-691-1888

Fredericksburg Elder Law: 540-479-1435

Rockville Elder Law: 301-519-8041

DC Elder Law: 202-587-2797

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