Caring For Alzheimer's Trivia Quiz

Answer: Yes and no. Alzheimer's is a sub-category of dementia.

Dementia is an umbrella term covering a number of diseases that involve memory loss. Alzheimer's is one of these but not generally associated with the socially inappropriate or aggressive behaviour that can occur in some other forms of dementia, like FTD (Frontotemporal dementia).

It now seems to be a trend among health care workers to use 'dementia' and 'Alzheimer's as synonyms; however to most people, the 'D' word is way too close to 'demented'. When Louise tried to get a travel agent to sell her a plane ticket for her mother who had dementia, she got nowhere.

When she called an hour later and inquired about buying a ticket for someone with Alzheimer's, there was no problem. So Louise recommends using 'dementia' with Mindy's doctor, but 'Alzheimer's' with everyone else.

Answer: There's not enough money for full-time professional care

Whether or not you become a caregiver depends a lot on your culture, your socio-economic status, your ethnicity, how much education you have, your religion and your previous relationship with the sufferer. If you are African-American or Polish, for example, you are more likely to become a caregiver because within your culture, people look after their families at home.

The more education you have, the less likely you are to be a caregiver, but if you are a religious believer, those statistics rise. And despite what the headlines read, only a very small percentage of caregivers have their eyes on the funds. Most studies point to the soaring costs of health care, government budget cuts and the economic constraints that are affecting more and more of us as the main reasons for the rise of home care for Alzheimer's patients.

Answer: Respite care

There are all kinds of respite care and how much of it is available to the caregiver depends on where you live and how much money you have. If you live in a bigger town or city, there may be elder day care centres run by clinics or community groups or day care services offered at an assisted care facility. Local universities and colleges often are looking for placements for students. Hiring a professional home care worker from an agency is optimum because they are usually trained, bonded, and if they can't make it the agency will send someone else.

But they're really expensive. In some places, respite care is available at minimal cost from public health clinics. If the caregiver is lucky, there is another family member or neighbour who will pitch in. Louise knows that for the sake of her sanity it is imperative to explore what is available, find out if there is financial assistance available, and arrange something as soon as possible.

Answer: Smile, nod, and see what she can get

Depending on where they live, caregivers may be eligible for free or nominally-charged services that will make their job easier. Caregivers can find out about these services by checking online, from doctors or clinics and even from friends. But a visit from a social worker is not necessarily a pleasant experience. Louise has to remember that along with the rise in home care has come a rise in elder abuse, which can range from not keeping charges clean and well-fed all the way to beatings and intimidation, with dollops of stealing and verbal belittlement along the way. Louise has to understand that her social worker has seen this before, he doesn't know her situation yet and he's looking for trouble.

She should keep her temper and see what services are available to her - in her case it's a woman who comes in once a week to help Mindy shower and a nice student from the university who comes to talk to Mindy. So it can't be all bad!

Answer: Going over old family photos

Recent studies have shown that listening to music that they liked in the past not only significantly stimulates late-stage Alzheimer's patients while listening, but will help them to communicate better after they stop listening. Regular exercise and especially talking, even if the caretaker is doing most of the talking, seems to help a lot as well. Looking at photos is an effective way of opening up patients in early stages, but for Mindy, at stage 5-6, pictures aren't much good any more. So if Louise doesn't have time for a chat, she puts Mindy's beloved Leonard Cohen on the iPod and then talks to her mom about the songs. And of course, lots of hugs, kisses and reassurance make her charge's scary and uncertain world much safer and warmer.

Answer: Someone who can minister to her spiritually

One visitor who really understands how to talk to someone suffering from Alzheimer's is not only a wonderful guest for the patient, but can give the caregiver some much-needed respite. Large groups, no matter how compatible, can bring on feelings of confusing and inadequacy. Furthermore, most patients in middle to late stages will probably not recognize even close members of their family who are not regular guests. Visits from friends can be nice, but only if they realize that their friend probably won't know who they are. Pet therapy has long been recognized as really effective in soothing and opening up patients, but the pet has to be carefully chosen. Karamelle, nervous and yappy, is not half as effective a companion as Sunny, the fat old tabby who likes to sit on Mindy's lap and doze and purr.

However, one really interesting aspect of Alzheimer's is the role of faith. It has been shown that strong faith in a sufferer not only alleviates symptoms of the disease, but can actually delay onset.

Moreover, religious professionals in general tend to be better listeners and more empathic than others. Even if she doesn't remember him from visit to visit, Father Brian helps to open up Mindy in a very special way.

Answer: He's in denial. He can't accept that his wife has Alzheimer's

Watching someone you love gradually disappear is very, very difficult and research shows that it can be more difficult for the spouse or partner of the patient than it is for a child. Feelings of hurt and resentment can lead to denial, interpreting Alzheimer's-related behaviours as merely willful ignorance, contrariness or acting 'crazy'.

A family member in denial needs help too, not the least because their behaviour can descend into verbal and physical abuse. So Louise usually takes her father aside and explains to him once again that Mindy has an illness and that she cannot possibly process looking after important papers/remember she just asked that question/locate Kevin's blue socks. Louise gently tries to make Kevin accept that it is not her mother's fault and hopes that one day her dad will see the light.

Answer: Test her eyesight himself and ask for Louise's impressions

Even mid-stage Alzheimer's sufferers are going to have big problems with any question that involves comparing things over time. Words like 'lately' or 'since' should be expunged from a doctor's vocabulary. Their patients are often unable to tell doctors where it hurts, what it is that bothers them or even how they are.

It's best to ask a relation or caregiver for their impressions, because they are often able to read signs in their charges' behaviour that will indicate whether things are getting better or worse and where it hurts.

In this case, Louise was happy to tell the doctor that her mother had been looking at books over the past month, which had not happened in a long while. The doctor was satisfied that the treatment was working.

Answer: Make plans on how to deflect nastiness in the future

Caregivers know that this kind of loutishness occurs from time to time among health care professionals who should really know better. Louise was livid and at first she wanted to have everybody at the clinic arrested or at least picket the building, but then she calmed down.

She did call, but instead of howling into the phone she explained politely that as health care workers, they were going to meet up with Alzheimer's all the time and it would be best to avoid being so unwittingly cruel. If her mother has to go to a new clinic or doctor Louise now plans to call beforehand and explain the situation and what kind of behaviour towards her mother she expects.

Answer: Check with a lawyer before making a move

In most countries it seems to be ok to use someone else's credit card with their permission. But if the cardholder has Alzheimer's, that could get sticky. A mid-stage sufferer might give you permission one day and then on the next decide that you're stealing. Further, using plastic that belongs to someone who is severely incapacitated can leave you open to accusations of fraud. Caregivers must be very careful about all the legal ramifications of caring for such patients. Louise thought it was a good idea to talk to a lawyer, because as she has no power of attorney she needs to know what she can and can't legally do about her mother's financial and medical affairs.

The lawyer can advise her on her present situation and what steps to take in the future.

Answer: She sees it as part of 'her' job and feels useless

Sure, your Alzheimer's sufferer can get on your nerves and everybody gets grumpy when they're hungry. But for women suffering from Alzheimer's it can be pretty disturbing to see their traditional roles as central caregiver in the home being taken on by someone else, even if that someone else is a family member. Louise now plans major tasks like housekeeping and cooking ahead of time and includes in each task something that her mother can do, like peeling potatoes or dusting the living room.

The worst that can happen is that Mindy cuts her thumb and the best thing is that Louise doesn't have to peel the potatoes or dust.

Not only does Mindy feel useful, she is useful. Louise just has to lower her standards a little.

Answer: Sit beside Mindy on the couch and read 'Vogue'

Louise has learned that the life of an Alzheimer's caregiver is largely a case of hurry up and wait. There are times during the day when Mindy is otherwise occupied, but this doesn't mean that Louise is off the job. Louise knows that whatever she does, one eye must be on Mindy at all times. So she has developed a number of interesting while-activities, including playing quizzes in beautiful Fun Trivia, Sims (great!), stretching with her Pilates rubber bands, reading newspapers and magazines and checking in with online caregiver support sites.

There are quite a few of these and most of them are really good. Unfortunately, Louise can suffer flak from family members and friends who interpret these activities as 'not doing anything'. Whatever.

Answer: Call her funny friend Shari and find out how the romance is going

'Role captivity', feeling trapped and alone, leads to all kinds of problems for caretakers and they can become 'invisible second patients'. Studies find them prone to alcohol and substance abuse, impulse shopping, anhedonia, impressive weight gain, morbid guilt, self-harm and depression. Louise knows all too well the comfort that comes from a glass of wine and a plate full of carbs. 'Rewarding' herself via short-term happiness with destructive results just isn't sensible. So, to avoid temptation, she decides to crack that John Grisham or watch another episode of 'Mad Men'. If it's a nice evening, she can go for a walk. Most importantly, Louise always makes an effort to reach out to her friends on Skype or Facebook, to call fun people and keep her precious friendships fresh.

It's a real distraction from more destructive pastimes and she'll go to bed happy!

Answer: This can't last forever. Do you have any plans for your own future?

Recent studies point to an ominous trend. Caregivers of Alzheimer's patients often do their real collapsing after their charges have died or have gone into an assisted care facility. Their 'role captivity' tends to narrow their outlook and thinking about the future is a strain.

When they are finally 'free' they can find their finances in disarray, they have no occupation and nothing to focus on. All they have left are 46 Hugh Grant DVDs and nowhere to go. Louise would be well advised to start planning for life after Mindy, set herself some financial and personal life goals and start to feel good about the future.

Answer: When their work is appreciated and commended

The rise in cases of Alzheimer's means more and more amateur caregivers. Researchers point out that positive aspects of the job include feelings of empowerment and 'self-efficacy' (I can handle anything) in caregivers, if their work is appreciated and commended, especially by health care workers they come into contact with. Louise is lucky enough to live in an area serviced by a public health clinic with a special program for caregivers, giving them counselling and support and where they are treated like invaluable lay partners.

She also finds caregiving has taught her a tremendous amount about some useful things like nutrition, prescription drugs and home care. She finds herself more patient, empathic and a much better listener than she used to be.

She has a warm and loving relationship with her mother and old resentments have melted away. She knows that there are some pretty amazing gains to caregiving and she's not sorry she made the choice to do it.