The task of caregiving has been called the “36 Hour Day” even at the best of times, when help from family, friends, professional services and day programs can be accessed. During this pandemic — when stuck at home, in isolation, for days, weeks or possibly longer, it is simply unimaginable how stressful this must be!

I have no play-book, best-practice manual, or evidence-based guidelines to help you with this task, but I have had the honour of working with hundreds of smart, creative and empathic caregivers over the years who have shared with me, some of their experience and advice in similar circumstances, that might be of help.

1. Keep to a daily schedule
   For the person with dementia, keeping to a fairly strict daily schedule with regular times for waking, grooming, dressing, activities, meals, and bedtime, is essential. While in isolation, this schedule will obviously differ from your regular life, but adapting it to the new circumstances and sticking with the same new daily routine helps both you and the person with dementia. A regular schedule helps physically with the person’s “biological clock” and provides an environment that is predictable and feels safe. For the caregiver, the daily schedule provides small goals and objectives for every hour of the day that can be planned and mastered.
2. Avoid lengthy napping
   While allowing the person with dementia to have long naps might seem like a great way to “keep them busy” and provide you with a break during the day, this could disrupt their nighttime sleep patterns, potentially leading to insomnia. Every person with dementia is an individual with their own sleep-wake cycle, and some may be able to nap at length during the day without disturbing their nighttime sleep, but most people should try to avoid napping at all, or have no more than a 15-20 minute nap.
3. Enjoy your backyard or balcony
   Part of the daily schedule should include spending some time getting outside. Getting dressed and going out to the backyard or even spending time on the balcony of your apartment is a great way to get real daylight and help with the “biological clock.” It also reduces the sense of being locked-in and isolated. If you can add some exercise while outside that is a bonus.
4. Exercise
   Exercise for the caregiver and the person with dementia is essential for physical health, acts as an antidepressant, and has been shown in some studies to improve cognition, and delay cognitive decline. Exercise can be incorporated in your daily time outdoors (even walking around your balcony!) and added to specific scheduled activities during the day. There are excellent online videos for seniors including chair exercise routines, that make exercise accessible to most people. Try to make the sessions fun, and remember — everything counts as long as you are moving and expending energy!
5. Meals and food preparation
   While paying attention to nutrition is always important, this becomes even more important in times of potential virus infection, in order to optimize the immune system. But preparing meals can also be another activity to be included as part of daily schedule. Try to ensure the person with dementia is given some tasks to help with food preparation. Consider “comfort foods” and culture-specific foods that may provoke memories for the person with dementia. Smells and aromas can be very powerful memory aids! Try preparing meals in different ways — a BBQ can be prepared and eaten outside on a balcony or in the backyard, making it more enjoyable. I don’t recommend alcoholic beverages for anyone with dementia but adding a “happy hour” with non-alcoholic cocktails and/or non-alcoholic beer is another way to add some fun and novelty to the daily schedule.
6. Activities for isolation
   Filling those periods on the daily schedule with activities will be the biggest challenge. Fortunately, videos and music are more accessible than ever. Consider really old movies that were favourites for the person with dementia, and especially musicals. Music has consistently been shown to improve behaviour in people with dementia including depression, anxiety and agitation.In terms of music, think about what the person with dementia really liked in the past, and try to pick music that you can dance to. Not only can this be fun, but it is good exercise, and there is even evidence that activity like ball-room dancing can slow the progression of dementia! Pull out some of the old board games you might still have and choose some that may be easier for the person with dementia.Finally, think of ways to remotely connect to your support network. Try to schedule daily video chats with friends and family, even if it is for short periods. As you know, most people with dementia will unfortunately have a short attention span and will benefit from briefer more frequent contacts. It is also equally important for you as the caregiver to remain connected to your support network, so be sure to call them back later, and let them know how you are coping.

I know that we are all scared and worried about our health and the health of our loved ones. I also recognize that for caregivers in particular, the task ahead is a difficult one, but for your health and the health of the person with dementia, it’s important to remain positive and hopeful in order to continue supporting yourself and the person you are caring for. As we wait for the pandemic to end, keep checking out reliable sources of information and support like the Alzheimer’s Society of Canada, Alzheimer’s Association, Alzheimer’s Disease International, and Sunnybrook.ca/COVID19.

This blog post was reviewed and updated in January 2021

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Answer: In the final stages of dementia, usually around the time when patients are no longer able to communicate or walk, and become bed-bound, a number will also develop swallowing problems, and some will refuse to eat. The swallowing problems can lead to fluids and food entering the lungs instead of the digestive system which can cause “aspiration pneumonia”. This is an agonizing time for caregivers and families who not only recognize eating and drinking as essential for survival, but also as one of the few remaining pleasures that contribute to quality of life for the patient in the end stages of the disease. Support from the medical team, and a realistic review of all available options is essential at this stage.

Exploring the options

Nutritionists and dietitians can provide a variety of recommendations, depending on the severity of the swallowing difficulties. At times this will involve changing the consistency of the diet to make it easier to swallow, and/or thickening the fluids to ensure they end up in the stomach, rather than the lungs. Proper positioning of the patient during the meals will also be suggested. At this point, caregivers and family often begin to think ahead, and wonder whether a feeding tube will be necessary. Feeding tubes, also referred to as “percutaneous endoscopic gastrostomy” (PEG) tubes are inserted through the skin, into the stomach by a brief surgical procedure, allowing artificial liquid nutritional fluids to be given, thus avoiding the need to eat by mouth. While this might sound like an ideal proposition to families, there are no current medical or nutritional scientific societies who recommend this for these situations. Why is that?

A difficult decision

It is generally acknowledged that for patients with end-stage dementia, feeding tubes do not actually improve nutritional status, and they do not improve survival. In fact, there are numerous complications associated with feeding tubes including pain, agitation, and diarrhea. Feeding tubes may not even prevent the aspiration pneumonia they are used for! Some patients will be so uncomfortable with the tubes, that they attempt to pull them out, which can lead to acute medical emergencies. Most importantly, there is no evidence that feeding tubes improve quality of life for the patient.

When treatment teams recommend against the use of a feeding tube, families sometimes argue that they just cannot let their relative “starve to death”. The decision to use a feeding tube needs to be made with the caregiver and family, taking into account the patient’s culture, religion and previously expressed wishes. The team will likely review the information summarized above, and inform caregivers that in general, tube feeding is not recommended as the risks outweigh the benefits.

The best alternative to feeding tubes is “assisted oral feeding”, in which a caregiver helps the patient eat small amounts of food and fluids slowly and carefully. The benefit of this procedure is the close contact between patient and caregiver (the “human touch”), and the more natural form of nutrition. These likely go a longer way to improving quality of life for patients, than any form of nutrition provided through a feeding tube.

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Answer: I must admit that if you’ve been reading my blog on a regular basis, the good news is few and far between. So before I dedicate a blog to the important topic of caregiver stress, let’s concentrate on what might be the positive and even enjoyable aspects of caregiving.

As you might expect, the study of the positive aspects of caregiving has received little attention in the research related to Alzheimer’s disease and dementia. My colleague at Sunnybrook, Dr Carole Cohen, has been one of the pioneers in this area, studying the topic for over 20 years. What has become apparent, is that being able to find and focus on the positive aspects of caregiving has important outcomes including reducing caregiving stress, improving emotional status, and possibly reducing the likelihood of institutionalization. Dr Cohen has determined that being able to find at least one positive aspect to caregiving is present in about three quarters of caregivers.

So what do caregivers identify as being positive or enjoyable about caregiving? Responses include having the love and company provided by the patient, feeling the relationship has been strengthened by the caregiving, enjoying pleasant interactions with the patient, improving the relationship with the patient and other family members, sharing past memories, feeling accomplished and proud in the role of a care provider, being able to fulfil a duty, obligation, or responsibility, being able to make proactive decisions, and being gratified by the fact that their care is leading to the avoidance of institutionalization. For some, the small daily moments of smiles, laughter and joking is enough to keep caregivers going.

Does finding pleasure in caregiving lead to less burden and stress, or does less burden and stress lead to greater ability to find pleasure in caregiving? The answer is probably both. Less caregiver depression and fewer behavioural problems exhibited by the patient have been associated with more positive caregiver experiences, but being able to spend less time assisting the patient with basic activities of daily living has also been associated with more positive caregiver experiences. Some researchers have noted that being able to find pleasure in overwhelmingly negative experiences can be an excellent coping technique for caregivers. Other research has described the importance of the “search for meaning” of the experience as being a positive and necessary activity for caregivers.

While emphasizing the positive aspects of caregiving is important and potentially beneficial for both patients and their caregivers, there is a possible downside. Some caregivers may be convinced that they are the only ones who can adequately care for their loved one with dementia. This may impede getting the extra care they need from community sources, and/or lead to refusal to institutionalize, even when it might be in the best interests of the patient and their caregiver.

As a Memory Doctor, I believe it is one of my responsibilities to act as cheerleader for the caregivers of my patients. I always try to emphasize what a great job they are doing and how they are ultimately ensuring that my patient has as good a quality of life as possible. I can’t always convince them that caregiving is enjoyable, but I can usually help them to feel a sense of mastery and satisfaction in their role.

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