Q: Is it correct to use the word "dementia" as I was scolded by a sister-in-law, who is a social worker. She informed me that using this word is a major faux-pas and I should use the term "cognitive difficulties." I was not using it derogatively regarding anyone. Did I miss a subtlety of any sort here?
A: The experts say no: Dementia is the correct term. In fact, a spokesperson for the Alzheimer's Society pointed out that "cognitive difficulties" can be caused be other illnesses beside dementia, so the terms are not interchangeable. That said, like many other brain diseases, illnesses such as Alzheimer still carries a stigma, which is why many patients conceal their diagnosis, so it is also important to talk openly about the disease to increase awareness and understanding.
Q: I have just been diagnosed with Alzheimer's. How do I get my affairs in order?
A: Since Alzheimer's is a progressive disease, it is important to address legal matters and care decisions early on. Toronto lawyer Jan Goddard, a specialist in elder law, offers this step-by-step guide:
- Plan ahead: Dementia affects your insight and judgment so you cannot rely on making good choices. Make sure you have a will, and power of attorney.
- Be open: Share your plans with family, friends and trusted advisers so everyone knows what you want.
- Anticipate conflict If members of your family don't get along while you are well, things will not improve if you develop dementia; make a plan that minimizes the possibility of conflict.
- Put yourself first: Make your priorities clear; if you want your money spent to keep you at home, even if there's nothing left for your family to inherit, say so.
- Provide for oversight: Consider a plan that allows for some monitoring of your decision maker by others you also trust
Q: My mother has just been diagnosed with Alzheimer's. I have several siblings, but she has put me in charge of her finances and care. How do I make sure I do things properly?
A: Experts says one of the most important things is to keep an open line of communication with your siblings and others involved - even it is just sending simple e-mail updates about your mother's condition. However, for any financial information or complex issues around care make sure you speak by phone or in person, to avoid any misunderstandings, and foster a sense of openness that helps reduce conflict down the road, when hard decisions about care and money will need to be made. In addition, elder-law specialist Jan Goddard offers these suggestions:
- If you are making decisions for a family member with dementia, get legal advice about the rules you must follow.
- Remember that the rules require you to put the interests of the incapacitated person ahead of your own; watch for conflicts of interest.
- Keep full, detailed records of your dealings with the other person's property.
Q: My siblings don't want to acknowledge that my mother is having memory problems, and don't agree on the level of care she needs. How can we get on the same page?
A: Accepting a parent's illness is hard, and depending on their relationship with the parent, siblings can result in different ways. It's a grieving process, says Jan Robson, dementia helpline co-ordinator with the Alzheimer's Society in British Columbia, with all the varied reactions involved - shock, anger, disbelief, denial, and, hopefully acceptance. Some siblings, however, may never reach that final stage. Ms. Robson advises: "First of all, try not to take their lack of acceptance as an attack on you. Instead, learn all you can about the disease and try to educate them in little bits and pieces. Try to avoid the blame game or useless comparisons about who does the most for your mother. It is probably safe to say that all of you love her - that's what makes this so tough."
Make sure all your mother's legal documents are in order, and try to bring your siblings together, possibly with someone from the Alzheimer's Society. But ultimately, your focus should be on the safety and well-being of your mother. Says Ms. Robson: "If she is at risk, and your siblings do not want to acknowledge this, contacting your local health authority responsible for seniors care is a way to remove the dilemma from the personal realm.