BC FORUM News - from the April 2014 issue of The Advocate

Dementia: there's no cure but acting early
can help patients and caregivers

By Soren Bech Editor, The Advocate

Dementia is a cruel disease. It steals the memories, thoughts, skills and emotions that make us who we are. It kills slowly.

Dementia is not only difficult for patients, who may sense that something is wrong but aren’t sure what it is. It is difficult for family members and caregivers – often elderly spouses – who must watch their loved one change and ebb away.

Some spouses of patients with late stage dementia describe it as grieving a death, every day, for years and years.

Dementia starts slowly, almost unnoticeably. A loss of interest in activities such as reading or watching TV (because the patient can no longer follow the story line). A continuing shift of cooking, cleaning and other household chores to the caregiving spouse. Forgetfulness. Unexpected mood swings. Irritability. Confusion. And sometimes physically striking out at the caregiver.

It’s hard for the family or caregiver to ask for help, especially if the dementia is undiagnosed. Instead of understanding, there may be anger at the victim’s behaviour.

But over a period that may span ten to 15 years, the weight on the caregiver grows heavier and heavier.

The patient may lose mobility, become incontinent, virtually stop eating, and drink so little that he or she becomes dehydrated.

Eventually, the caregiver is on duty 24 hours a day, seven days a week, guarding a loved one who may wander and fall during a middle of the night attempt to reach the washroom.

There is no cure. Early diagnosis won’t change that. But early diagnosis can help ensure the patient receives good care. It can also help ensure the caregiver understands what is happening and receives support.

Community services are available. They are not quick to respond.

You may need a doctor’s referral. A case manager. An assessment of the patient’s and caregiver’s needs. It takes weeks.

Putting off an early call for help is likely to result in a call to 911 instead. Ambulance attendants will be put in the unenviable position of removing from their home an elderly man or woman who doesn’t understand and doesn’t want to go.

This is likely to be followed by long touch-and-go days in the emergency ward and acute care. Then, if all goes well, you can expect the patient to be transferred to temporary residential care – perhaps far from home – while waiting for a more permanent residential care bed to become available.

If you are caring for someone who has dementia, or suspect may be getting dementia, don’t leave it too late.

Discuss their wishes with them while they understand. Arrange a permanent power of attorney while he or she is capable of granting it.

Do it now. With dementia, tomorrow is unlikely to be a better day. It may be far worse.