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Tough questions answered

This week’s Globe and Mail feature on dementia  has generated a lot of interest across Canada and facilitated more understanding about a disease that already impacts more than 70,000 British Columbians.
The feature has raised even more questions, suggesting the need for more information and education about dementia. Here in B.C., some of our local experts share their knowledge.
 

Family Ties

Seeing ones parent decline is difficult; it challenges our sense of who they have always been, and how we relate to them.  A grieving process is necessary, and this entails many possible reactions, including sadness, shock, anger, frustration, disbelief, denial, and, hopefully, acceptance.  Sometimes we go through all of these reactions, and return to them again and again as the disease progresses.  It sounds like you have moved into acceptance, and are taking a practical view of your mother’s limitations and the changes that will be required as a result.  Your siblings have not reached that point yet. 

Please recognize that this may happen with your siblings sooner rather than later, or it may never happen.  For your part, you can do a few things.  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.  Ensure that your mother’s legal documents are in order; this will depend on where you live, but things like Power of Attorney, Representation Agreement, Living Will, etc. should be discussed with your mother while she is still able to express her opinions in a competent manner.  See if your siblings will agree to see someone from the Alzheimer Society with you, to give all of you a chance to discuss the situation and learn what to expect.  Some communities have agencies that will assist with family mediation in this type of situation as well.

Finally, keep in mind that your main goal should be the health and well-being of your mother.  If she is declining, but is still safe on her own, you might be able to back off a bit.  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.

Sensitive Issues

I am the caregiver for my Mom who was diagnosed about 2 years ago with Dementia. She has a partner but she basically took care of him for 45 years and now he is trying hard to cope. I do all the cleaning, cooking, finances, etc. The one thing I need help with is trying to get her to take a shower and let me assist her. She is very modest. I also want them to move into my house into a basement apartment I have but I don't want to force her. One day she says she will move in and the next she says she needs to think about it. She has lost control over her bowels. It would be easier for me if they would move in. I need a little help with these 2 issues.

Resistance to bathing and showering is common for many people with dementia and there are several factors why this occurs.  First, the splashing of water or stepping into a tub can be a frightening experience often because there are changes in vision and a loss of depth perception.  Stepping into a tub might look like stepping into a hole and cause fear of falling.  Second, the changes in the brain from dementia can result in a loss of ability to recognize the need to wash, or how to organize oneself, for example, how to manipulate taps and adjust water temperature and flow, or what soap is for, how to open the shampoo, etc.  And thirdly, yes, modesty is a factor that needs to be respected and addressed in a planned approach.  

If your mother permits you to assist her in the shower, the following tips may be of assistance:

Regarding the bowel incontinence, using an incontinence undergarment product from drug stores is helpful and preferred over repeated soiled laundry.  If you are able to anticipate when her regular bowel movement pattern is (e.g., first thing in the morning, after a meal), guiding her routinely to the toilet may result in some success. Incontinence of bowels is often related to several factors: her loss of ability to recognize the urge to go, or not recognizing where the bathroom is, how to use the toilet, remove clothing, wipe, handwash, etc. These are all skills that are lost in the later stages of dementia.  By breaking the steps down, and providing a combination of assistance and some simple verbal cues and direction, you may find that you have more success. 

I appreciate that it would be helpful and more convenient to bring your mother to live closer to yourself. It sounds like you are trying to do this in a respectful way by gaining her agreement.  Her abilities to understand what you are asking her and the consequences of this decision may be very limited at this stage of dementia – and she may no longer be able to give you her informed consent.  Did you have the opportunity to discuss these types of decisions earlier with her, e.g., after she was diagnosed?  Having an honest talk about future needs is encouraged as it will provide family members with guidance when facing these challenging situations later in the dementia journey.  If you did not have this discussion earlier, then as her primary caregiver and someone who has personal knowledge of her lifetime decisions and values, you are left to think about what your mother might have wanted for herself in an earlier stage.  There is no correct answer, but that perspective may help guide your decision.

For your consideration however, a move to a new environment is often very difficult for people with dementia, and can be anxiety producing as the new environment is both unfamiliar and they don’t know why they are there.  As well, if it is a significant move, there may be a loss of connection with friends, neighbours and familiar faces and voices. This, too, can be perceived as a loss. 

Finally, I would wish to say that it sounds like you are providing a great deal of love and care to your mother through some very tough personal care issues.  I hope that you have connected with your local community health services and asked for some assistance. Discussing the changing care needs of your mother with a case manager might assist in exploring new options for physical help (e.g., assistance with bathing), practical tips to adapt your home, respite or day program options to give you a break, and assist your success in being your Mom’s caregiver.  Also, connecting with your local Alzheimer Society  for support and education is well known to help caregivers cope with the stress and burden of this most difficult but rewarding journey.

Reducing your risk

What are the best ways to prevent dementia?

Dementia is an umbrella term for a set of symptoms related to cognitive decline. There are many causes of dementia, some which are preventable and reversible, and others which are not. Examples of acute, reversible causes of dementia include drug interactions, infections, fever and dehydration. Examples of chronic, irreversible dementias include Lewy Body Dementia, Vascular Dementia, and the most common form of dementia – Alzheimer’s disease.

There is no cure for Alzheimer’s, and research on whether the disease can be prevented is currently inconclusive. However, through epidemiological studies, researchers have uncovered specific risk factors that are associated with the disease. Some of these risk factors are things we cannot control. For example, research tells us that early-onset Alzheimer’s, which represents a small percentage of cases, is often hereditary. In addition, we know that age is the most important risk factor associated with Alzheimer’s disease. 

Although we cannot control our genetics or our age, researchers have identified other risk factors that we are able to control. These modifiable risk factors include strategies that are related to healthy aging in general. For instance, keeping your brain active, staying socially active, and choosing a healthy lifestyle may play a role in reducing your risk of dementia. One thing we do know is that what’s good for your heart is good for your brain, especially when it comes to Vascular Dementia, which is associated with strokes. There has also been a great deal of interest in brain training, such as playing crossword puzzles and special computer games, as strategies to ward off dementia. The jury is still out on the efficacy of these activities in protecting or strengthening brain health, but researchers are still exploring their potential.

Overall, it is important to recognize that you can do everything right, such as exercise and eat a healthy diet, and still get Alzheimer’s disease. This is due in part to the unmodifiable risk factors of age and genetics, but also to the fact that we still do not fully understand the causes of the disease, which are likely multiple. Until we do, our best bet is to take care of our bodies, and our brains. For more information on strategies for reducing the risk of Alzheimer’s disease, visit the Alzheimer Society website.

Sharing the news with loved ones

Receiving a diagnosis of Alzheimer’s disease or another form of dementia can be extremely upsetting for an individual. Many people respond to their diagnosis with a variety of feelings, including anger, embarrassment, frustration, fear, and sadness. Unfortunately, there is still a negative stigma associated with dementia that our society has yet to overcome. It is important to recognize that there are multiple reasons why disclosing a diagnosis of dementia is difficult, and every person’s challenges are unique.

We often use the analogy that a diagnosis of dementia is like a hot cup of coffee; people need to sip the reality of their condition slowly and carefully. The person with dementia may need to take some time before they are ready to fully face the disease themselves, and let others know about their illness. Telling others about one’s diagnosis may be a long process and often people will only tell those who are closest to them, such as a spouse, before they are ready to tell others.

Helping people with dementia to learn about the disease and how it is affecting them can be an important first step in encouraging them to tell others about their diagnosis. People need to know that the symptoms they are experiencing are not their fault. Changes in memory, thinking and behaviour are all due to changes in the brain caused by the disease. Once a person with dementia is informed about their illness, it may be easier for them to share their diagnosis with others who will then be better prepared to support them.

Most importantly, let the person know that their diagnosis of Alzheimer’s disease or another dementia does not mean that their life is over, as it is possible to live well with the disease and continue to have meaningful relationships with others. Having a network of family and friends who can provide support, both emotional and practical, is a vital part of living well with the disease, both for the person with dementia and those who are close to them.

We encourage people to share their diagnosis with family members as early as possible because doing so provides them with an opportunity to plan for their future. Communicating wishes regarding health care and financial decisions can make things easier for everyone involved. The person gets to make their wishes known, and families can have peace of mind when making future decisions on the person’s behalf.

Caring for someone with Alzheimer’s disease or a related dementia can be a difficult journey. Alzheimer’s is a progressive, degenerative disease, and caregivers are often at risk for physical and emotional problems. Close family members, such as spouses, need support from others throughout the entire journey with the disease. If you are close to someone with dementia, seek out your own sources of support early on in the disease. Family members, friends, and the support of your local Alzheimer Society can provide the help that you need.

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