Facing PD and Dementia — A guide for Caregivers

Facing PD and Dementia — A guide for Caregivers

By Leah Galle

When Dr. James Parkinson wrote his original article about the disease that would be named after him, it was thought that the senses and intellect were spared in people with Parkinson's (PWP), says Dr. Ron Tintner, assistant professor of neurology at the Baylor College of Medicine. "We now know that this is not the case."

Neurologists agree that not all PWP develop dementia. Dr. Tintner, who specializes in Parkinson's disease and dementia, notes that there is some debate, however, about the actual prevalence of dementia in PWP. Some studies show that approximately one third of PWP will develop dementia at some point during the course of their disease, while others, including Dr. Tintner, believe that between 40 to 70 percent experience this debilitating condition. Those affected, according to Dr. Tintner, are typically older patients with PD, age 60 and over. "There seems to be some interaction with age. It is not typically a concern with young Parkinson's patients."

Dr. Tintner adds that there is a wide range in the symptoms exhibited by those with PD and dementia, from mild to severe, as well as a host of medications to help treat Parkinson's related dementias. Severe dementia is rare for those patients who do not exhibit signs of dementia at the onset of their PD symptoms, according to Dr. Tintner.

How Does Dementia Affect PWP?
In his publication entitled Dementia in Parkinson's Disease, Dr. Abraham Lieberman of the National Parkinson Foundation (NPF) states, "Dementia, a global decline in intellect, is among the most feared complications of Parkinson's disease." He adds, "The behavioral consequences of dementia can be painfully obvious. Patients may be confused, disoriented and unable to be left alone. They may be agitated, delusional, moody and disinhibited." Additionally, Dr. Lieberman says that patients with dementia usually can't sleep at night and can't stay awake during the day. They also may face incontinence issues.

PD-related dementias are often misdiagnosed as Alzheimer's disease, which can be traced to the cortical structure in the brain (often referred to as the frontal lobe) and for which there is little effective treatment available.

Types of PD-related Dementias
There are two types of dementia common to patients with PD — both occurring primarily in the substantia nigra (the midbrain), both treatable:

Parkinson's Disease Dementia (PDD)
The most common form of dementia among PWP, Parkinson's Disease Dementia (PDD) is signified by Lewy bodies in the substantia nigra and Alzheimer changes in the brain. In a literature review, Dr. Lieberman found that 74 percent of PD patients with dementia experienced PDD. In PDD, the condition typically begins with a slowing of the thought processes and difficulty concentrating, eventually progressing to confusion. Dr. Tintner says that PD patients are typically diagnosed with PDD if the dementia symptoms began occurring more than one year after the PD symptoms began.

Dementia with Lewy Bodies (DLB)
According to the Mayo Clinic at Jacksonville, Florida, Dementia with Lewy Bodies (DLB) is a degenerative disorder of the brain in which nerve cells die over time, causing a progressive decline in thinking abilities and, ultimately, dementia. Lewy bodies often appear in areas deep within the brain and are associated with the tremor and rigidity of PD. Lewy bodies cause signs and symptoms similar to those of Alzheimer's disease. Unlike Alzheimer's, though, DLB may affect speed of thinking, attention and concentration, and visual spatial abilities more severely than memory and language. It can also cause hallucinations and large fluctuations in degree of alertness. Dr. Tintner says that PD patients are typically diagnosed with DLB if their dementia symptoms began less than one year after the beginning of their PD symptoms.

The Importance of a Diagnosis
Dr. Tintner urges PWP caregivers who are seeing signs of dementia in their loved ones (see sidebar for the common signs of dementia) to schedule a visit with a neurologist as soon as possible. "Your doctor needs to do a work up to make sure there isn't another cause for the dementia. For instance, a number of medications can make PD-related dementias worse, including those for PD and conditions such as incontinence." Additionally, Dr. Tintner says that there are reversible dementias that may result from vitamin deficiencies, certain infections, thyroid problems, tumors or swelling of the brain, among others. "It's important to address the dementia with a doctor — and the sooner the better."

Treatments Available
There are several medications available to treat dementia in PWP. According to reports from the Baylor College of Medicine, conventional drugs given to alleviate hallucinations, such as Mellaril® or Haldol® worsen Parkinsonian symptoms. Newer medications such as clozapine and Seroquel® can suppress hallucinations without worsening PD symptoms. Clozapine, however, can cause loss of infection-fighting white blood cells in 1-2 percent of cases, a serious side effect.

Challenges for Caregivers
In a recent study, the Family Caregiver Alliance (FCA) found that PD caregivers spend an average of 96 hours per week, or 14 hours per day, caring for their loved ones. They have higher levels of depression than other caregivers, more of them are caring for spouses and many are suffering from medical conditions, including diabetes and heart disease. The physical demands of caregiving also are higher among PD caregivers. The FCA found that 45 percent of those cared for in the study require help eating, 69 percent need help bathing, 71 percent need help dressing, 65 percent need help toileting and 67 percent need help transferring (bed to chair, etc.).

PD caregivers also get less sleep than other caregivers, with 56 percent regularly being woken at night to care for their loved ones. In the regular caregiver population, that number is 40 percent. Add to that the emotional rollercoaster that dementia creates and it's easy to see how providing care for a PD patient stricken with dementia can take its toll.

Tips for Caregivers
FCA Program Director Donna Schempp has the following tips for caregivers when dealing with loved ones with dementia:

1. Don't try to get them to be logical, rationale and reasonable. This is expecting too much.
2. Don't try to get them to make agreements. They aren't in a position to make agreements.
3. Don't always tell the truth. Sometimes being honest isn't the best choice. For instance, if your loved one needs to be on an antidepressant to alleviate anxiety or a sleeping medication so that the caregiver can get some rest, it may be in both the caregiver's and the PWP's best interest to say the medicine is for your memory or some other acceptable symptom if the person would have trouble accepting a pill that is for depression.
4. Don't make complex requests. Remember to use one command at a time. If you say, "Go upstairs and change your clothes," you've just given five commands: get up, go to the stairs, walk up the stairs, take off your clothes and put your clothes on. That's probably too much for a person with dementia to remember.

Dealing with Difficult Behaviors
Donna has the following tips for dealing with the extremely challenging behaviors caused by dementia, including paranoia, anger, frustration, and accusations.

1. Remember that it's the disease talking and that your loved one's brain cells are not communicating properly. Try not to think things like, "This must be what they really thought of me all along and never told me."
2. Know that a person with dementia has no control over what they are doing or saying. Don't get angry or hold it against them. They cannot help their behavior.
3. Use distraction as a way to get the person off of being negative or accusatory. Fighting back won't solve anything and will just make them angry.

Click here for the FCA's complete list of behavior management strategies for dementia.

Handling Changing Relationships
For spouses many issues come into play. Donna says it can feel like you lost your best friend. You go from a husband/wife relationship to a parent/child relationship because the person is so dependent on you. You lose the intimacy that you once had and may no longer feel sexual toward that person. Perhaps you feel that you are taking advantage of your loved one for wanting to maintain a sexual relationship despite the lack of intimacy. You need to acknowledge these feelings and redefine your relationship depending on how your spouse feels or reacts.

Adult children of PWP with dementia often face a reversal of roles which can be difficult for both the adult child and the parent. For Patti of Gainesville, Florida, taking the helm as her father's primary caregiver was a simple decision. "He's always been there for me, and I would do anything for him." When her mother became depressed from the challenges of providing full-time care with no assistance, Patti suggested they move in with her and her family. (Click here for Patti's story.)

"When Daddy's dementia is at full peak, he's completely immobile. He can't eat. He can't drink. He can't walk. It affects him as though he's drunk or on heavy medication." Patti's father is unable to take medications for his PD due to intolerable side effects, but since he started taking Seroquel, his hallucinations are gone. "He's still forgetful and gets disoriented, but the hallucinations were the really tough part."

Keeping the Enemy at Bay
Until PD and dementia entered his life, Patti's father was a strong patriarch. "He's a World War II veteran who served as a signalman in the Navy. He's tough. But this disease is like the enemy. We keep firing, trying to keep it at bay, but it just keeps coming closer and closer. Every morning that I wake up and see him feels like another victory."

"Caregiving is a tough job. You have to have a lot of compassion and keep in mind that they don't want to have you feed them, bathe them and wipe them. They don't want to keep you up at night. I've never lost my patience with him because I know that it is not his choice to live this way, but he cannot get up and walk away. And if he can wake up every day and smile when he sees me, then by God, I'm going to smile for him too."

Grieve Your Losses
When Marguerite's husband of 20 years first began forgetting recent events or stopping a thought mid-sentence, she thought he was just having a bad day with his Parkinson's disease (PD). "It became almost like a jigsaw puzzle. I was filling in the pieces all around his and denying what would soon become very obvious." Coach, as everyone in their Connecticut hometown called the virile and strong man who led two high-school basketball teams to victory in state championships, had dementia. Marguerite couldn't have imagined how swiftly dementia would take hold of their lives. (Click here to read Marguerite's story.)

Within six months of his first symptoms, Coach's dementia symptoms became so severe that Marguerite could not leave him alone at all. Marguerite was forced to admit that she could no longer provide the care that her husband needed. "I never wanted to put my husband in a nursing home. It was never part of the plan."

After Marguerite realized that she could no longer be his primary caregiver, she did something that experts say is very important: she grieved for him and their lost relationship. "Oh how I want him back," says Marguerite. "It's like you've lost them. Like they've died, but they haven't. I cried and cried and said goodbye to the life we had together, to the person that he was."

"It was so hard, but it's enabled me to stop focusing on the bad and think more about the good times that we had. I remember the way he smelled. I can picture him waiting for me at a restaurant in his grey trousers and navy jacket and thinking how lucky I was that he was waiting to see me."

Donna Schempp advises caregivers facing dementia to grieve each little loss that they experience during the course of their loved one's dementia. "Acknowledge your grief, your loss. Feel the sadness. Everyone grieves differently. You might cry, get mad, pray, overeat, sleep a lot. The important thing is to acknowledge that life isn’t the same as it has always been, and with change comes many feelings."

Finding Support
Donna recommends that PD caregivers who also are dealing with issues related to dementia attend an Alzheimer's disease support group. "Don't be afraid of the word Alzheimer's. These people understand dementia and can offer valuable support by way of empathy and advice." The Alzheimer's Association has local support groups available to caregivers as well as a 24-hour support line for anyone with questions about memory loss, dementia or Alzheimer's disease. Visit www.alz.org for more information.

The FCA also offers support via e-mail to caregivers who need to talk with a professional. The FCA has a staff of qualified counselors available to respond to your questions, as well as the Caregiver Online Support Group, which offers a safe place for caregivers to discuss the stresses, challenges and rewards of caring for a loved one.

Or, if you're looking for online discussion forums, you may want to check into www.parkinsonscare.com, a forum on the National Parkinson Foundation's caregivers web site. Dementia is a common topic on this forum.

Letting Go
The decision to place a loved one in a nursing facility is an extremely difficult one. Every caregiver has to decide on his or her own when and if placement in a long-term-care facility is necessary.

According to Donna Schempp, the most common reasons for placement are:

1. the caregiver's health is suffering by virtue of being a caregiver.
2. the caregiver can no longer tolerate the incredible demands of caregiving.

"We often want to keep people home as long as possible," says Donna. "Everyone will have a different bottom line. Caregivers often feel guilt for putting their loved ones in a nursing facility. We caution that they need to understand the difference between guilt and regret. Guilt is to know that you have done something wrong. Regret is when you are in a situation that is out of your control and you have no other choice."

The challenges of caring for a loved one suffering from Parkinson's disease and dementia may create that situation. Remember help is out there for both you and your loved one. However, if your loved one becomes a danger to himself or another person, you may be faced with a difficult decision. If you are confident with the decision you make, it will be the right one for both of you.