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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When new medical problems arise, there is a significant chance that a person’s cognition or thinking, ability to function and behaviour may worsen. That is why it is very important for caregivers to continuously monitor the person with dementia and seek appropriate medical care whenever there is concern.

Rather than assuming a change, or any “worsening,” is being caused by the “natural” deterioration of the dementia, caregivers must be aware that any sudden change in cognition, function and behaviour is a clue that something medical might be happening.

While older persons with dementia are susceptible to all the medical problems that typically occur at this age, there are several conditions that are more common and worth paying particular attention to.

Urinary incontinence

With disease progression, and commonly in the moderate to severe stages of the illness, people with dementia often lose the ability to control their bladder function, referred to as urinary incontinence. However, urinary incontinence that occurs early in the disease, or that occurs suddenly at any stage, could be associated with a bladder, or urinary tract infection (UTI).

UTIs are very common in older females and the person with dementia may not be able to complain about frequently associated symptoms such as pain and burning with urination. Caregivers should ensure that a UTI is ruled-out with a simple test of the urine, because UTIs can also cause delirium in the person with dementia, leading to acute and dramatic changes in cognition and behaviour.

Treatment of UTIs with antibiotics is also simple and straightforward and can lead quickly to improvements in symptoms including both the incontinence and the dementia. Besides UTIs, there are many other causes of urinary incontinence that may require medical treatment. Again, caregivers should not necessarily consider this a sign of dementia progression, but rather should seek prompt medical attention.

Interestingly, when urinary incontinence occurs early in the course of dementia, and is accompanied by an unsteady gait, this could be the sign of a specific and relatively rare form of dementia called Normal Pressure Hydrocephalus, notable for being potentially treatable with a neurosurgical procedure.

Shaking, stiffness and unsteady

Parkinsonism, or symptoms of Parkinson’s Disease, include tremor (shaking), stiffness/rigidity, and unsteadiness. These symptoms can worsen function and lead to falls. The relationship between dementia and Parkinsonian symptoms is extremely complicated, because patients with Parkinson’s Disease can also have cognitive impairment and dementia (referred to as Parkinson’s Disease Dementia). Prominent Parkinson’s symptoms are also a part of another common dementia called Dementia with Lewy Bodies. Furthermore, patients with Alzheimer’s Disease can have mild Parkinson’s symptoms, which become more common in the advanced stages of the illness.

Finally, there are a number of medications that can cause Parkinson’s symptoms. This is a particularly common side-effect of the antipsychotics, which are used to treat agitation and aggression in persons with dementia. Depending on the cause of the Parkinsonism, the symptoms may be more or less treatable, but caregivers should always be aware of these symptoms and report them to the treating physician because it’s important to diagnose and in terms of quality of life.

Seizures

Seizures are generally brief episodes of abnormal electrical brain activity that cause periods of shaking, either generalized or focal (e.g. a single limb), with variable states of consciousness (frequently a complete loss of consciousness).

People who suffer from multiple episodes of seizures associated with a brain disorder are said to have epilepsy. People with epilepsy earlier in life can develop dementia, but it also not uncommon for people with dementia to have a seizure for the first time after they have been diagnosed with dementia.

Seizures in patients with dementia can be caused by many conditions including strokes (either brain blood vessel blockage or bleeding), brain tumours, fever, infection, head injuries and medications. About 10% of patients with Alzheimer’s disease will have a seizure, usually in the moderate to severe stages of the illness with no obvious cause being found, and likely due to the brain degeneration.

All persons with dementia who have a first seizure should be investigated for potentially treatable conditions. Seizures associated with progressive Alzheimer’s Disease may not recur and may not require treatment with anti-epileptic drugs. Finally, people with long-standing epilepsy treated with anti-epileptic drugs who develop cognitive impairment and dementia may require reassessment of the doses and type of drug used, as these medications can be associated with prominent negative cognitive effects.

Good general medical care is synonymous with good dementia care. People with dementia should be monitored regularly by their primary care physician, and any significant change in their condition should be brought to the attention of the physician by the caregiver, and investigated and treated appropriately. It is only with excellent medical care, that we can optimize the cognition, function, behaviour and quality of life of the person with dementia.

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Having said that, there are many potential avenues of intervention and assistance that can ease the journey for the caregiver and lead to an improvement in quality of life for the patient with the dementia. One of the best interventions that I recommend for all my patients and their caregivers, is to attend a dementia day program.

What is a dementia day program?

Dementia day programs take place in a variety of locations in the community and are run by a number of providers including government, charitable organizations, and Alzheimer’s Associations. The programs are delivered to groups of people with dementia. While some facilities stream by level of cognitive impairment (mild, moderate and/or severe), many include patients with the full spectrum of impairment.

Activities vary by organization but can include exercise, often chair exercises or walking groups, some programs offer discussion groups or music appreciation, which may involve singing and dance. Other activities include: pet therapy, arts and crafts and sports activities – all geared specifically to people with cognitive impairment.

Different providers offer different schedules for programming. I have patients attending programs varying from half a day a week, to full days, for seven days a week.

Meals are often available depending on the timing of the programs. Costs vary with some programs being fully subsidized and other programs requiring a fee for participation. Some programs provide transportation to and from the facility.

Related post: The positive aspects of caregiving for dementia

Reluctant to send a relative to a dementia day program?

Many caregivers are reluctant to send their relatives to these programs. Caregivers will often say: “My husband will refuse to go – he won’t leave my side”; “My wife was never a ‘joiner’ or a group person”; “My husband was a professor – there’s no way he’s going to enjoy playing cards or doing arts and crafts”; or “My wife will become distraught if she’s put in a program with severely impaired individuals.” My first response to these concerns is always, “Try sending him/her to the program a couple of times before you pass judgement.”

When people with dementia are welcomed by the warm, empathic and experienced staff of a day program, this is often enough to overcome the initial reluctance to leave their caregiver. When someone with a cognitive impairment participates in non-threatening, seemingly simple activities, it can help provide the person with a sense of accomplishment and mastery, regardless of their previous professions and whether they had been physiotherapists, physicians or physicists.

Caregivers may be concerned about how their relative with dementia will react if he or she is less impaired than other day program participants. I typically recommend caregivers tell the person that they are going to a facility to act as a volunteer to help older, frail, individuals. This therefore becomes a “job” and responsibility for these individuals, which can help to improve their self-esteem.

Discussing caregiver concerns with the staff at the program prior to starting, and even attending the first session or two, is often sufficient to allow the person with dementia to adapt and incorporate the program in their structured daily life routine.

Benefits of dementia day programs

Some of the benefits of day programs for the person with dementia include socialization, mental and physical stimulation, encouraging a sense of mastery, improvement in mood and potentially problematic behaviours like agitation and apathy. Participants sleep and appetite will often improve as a result of increased physical and mental activities.

While attendance at a day program is occasionally resisted by the person with dementia, I often recommend trying again every few months. Behaviours, likes and dislikes often change dramatically over the course of the illness. The potential benefits of day programs are overwhelmingly worth the effort to ensure their attendance.

How caregivers benefit from dementia day programs

When a person with dementia attends a program, it allows the caregiver to have personal time for their own needs such as shopping, work, leisure, time with friends. Dementia day programs can offer the benefit of a break, even for a little while, to help give caregivers an opportunity to focus on themselves.

Please consider a dementia day program for your relative with dementia. Discuss this with your family physician and speak to your local Alzheimer’s Society representative for a list of programs in your area. Visit the program, with or without your relative with dementia, and sign up for a trial. It will likely be the most helpful intervention offered to you and your relative over the course of the illness.

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Answer: One of the most popular questions I’ve received over the past 30 years, as a geriatric psychiatrist is, “What are the secrets to successful aging?” I usually start by quipping, “Good genes and good luck!” But, of course, there’s much more to consider.

What is “successful aging”?

One definition includes the following components: avoidance of physical illness and disability, maintenance of optimal cognitive and physical health, and remaining engaged with life. The concept has changed slightly over the years and today, many people and organizations also talk about “positive aging”, “healthy aging” and “aging well”. Rather than succumbing to Ageism (negative attitudes toward aging and the elderly) and the traditional focus on disease and disability, this positive aging movement strives to turn aging into a positive experience where everyone is encouraged to grow, reach their full potential, and ensure older adults are respected and able to live their full lives with dignity. By necessity, this movement recognizes the need to work at multiple levels including the individual, their family and the society in which they live.

Much has been written about the keys to successful aging over the past 50 years, and while a lot does depend on your genes, there are also many things you can do to control a major portion of your aging destiny. Many of these recommendations are the types of things your family physician discusses with you every year at your annual periodic health examination: physical exercise, mentally stimulating activities, staying socially engaged with family, friends and your community, avoiding smoking and drinking, and make sure your doctor is keeping an eye on your vascular risk factors (blood pressure, cholesterol, blood sugar, weight etc.).

Characteristics of successful aging

In my experience, the individuals who cope best with the physical challenges and psychosocial stressors of aging share several common characteristics.

1. Flexibility and adaptability

First of all, they are remarkably flexible and adaptable. While this might sound simply like being able to “roll with the punches”, it is actually a much more active approach to dealing with changes in one’s life.

For example, an individual who is aging successfully may recognize that they are beginning to have trouble playing tennis, and adapt by switching to racquetball, or badminton. Perhaps, they take up walking or swimming instead of running. Or, if a person enjoys hitting the slopes, makes the change from downhill to cross-country skiing. The point being, rather than considering changes in ability as a loss or failure, that they instead become opportunities to learn new skills and enjoy new activities. This leads to the second characteristic of successful aging: lifelong learning.

2. Lifelong learning

Individuals who age successfully are constantly learning – and the opportunities to do this today are limitless. Attending lectures in community centres, learning online, taking continuing education classes or even enrolling in degree programs at university are all easily accessible today.

Learn a new language, learn ballroom dancing, learn how to play bridge, take bible study classes. And don’t forget to mix these up and take advantage of group and social activities along with the intellectual stimulation. These activities allow for personal growth, improve self-regard, and most importantly, stimulate brain function.

3. Social Connectedness

The third characteristic of successful aging is social connectedness. Keep family close, and keep friends even closer! While some of the saddest people I see are those individuals who tell me “all my friends have died…” the individual who is aging successfully will ensure they put themselves into situations where they can continue to meet and befriend others, and continuously grow their social circle. Love and friendship is the strongest antidote to depression and isolation that I know of.

Let’s face it – aging is not for the faint of heart. However, being adaptable, willing to learn new things and staying connected to individuals you love will help restrain those genes and allow you to make your own luck.

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Answer: This is an agonizing decision for many caregivers. Let’s examine some of the issues that lead to requiring the use of an antipsychotic, and then discuss what type of drugs antipsychotics are, and what are the risks and benefits of using them in older people with dementia.

Issues that may lead to antipsychotic treatment

As noted in many of my previous blogs, disturbing emotional and behavioural symptoms occur in most patients with Alzheimer’s or other types of dementia at some point in the illness. Of all these symptoms like apathy, depression, anxiety, and insomnia, often the most serious behavioral problem faced by caregivers is agitation and aggression. Approximately 20% of patients with Alzheimer’s display significant aggression and the prevalence is even higher in institutionalized patients.

Aggression occurs commonly in the context of receiving personal care (e.g. bathing, grooming, toileting) and is often directed at the caregiver. These behaviours can lead to serious physical harm since many caregivers are frail themselves. However, because many patients with dementia are physically vulnerable, these aggressive behaviors can potentially lead to the patients harming themselves. Physical aggression has been shown to increase caregiver burden, the cost of care, the risk of institutionalization, and even increase mortality.

What causes aggression in patients with dementia?

Agitation and aggression are likely caused by a multitude of factors including: environmental stressors, pain, hunger, noise, unmet physical and emotional needs, and the direct effects of the biological features of the disease process (brain pathology and chemical changes).

Treatment always begins with an appropriate medical diagnosis, ruling out any physical condition (e.g. an infection), medication effects, or environmental problems. Non-drug treatments are always tried first and can include interventions like music, aromatherapy, exercise, and multi-sensory therapies also known as “Snoezelen”.

Probably the most effective non-drug treatment is teaching the caregiver to use behavior modification techniques. However, when the most intense non-drug therapy treatments have little impact, then, drug therapies could be considered.

Antipsychotics as treatment

Of all the drug therapies used to treat agitation and aggression in Alzheimer’s disease and other dementias, by far the best studied in dozens of trials with thousands of patients, are the antipsychotics. As the name suggests, antipsychotics were originally studied to treat psychotic symptoms such as, hallucinations and delusions, in patients with schizophrenia.

In reality however, the term “antipsychotics”, is a misnomer, as many of these drugs have been shown to be useful for many other psychiatric (e.g. Bipolar Disorder, depression, etc.) and non-psychiatric conditions (e.g. nausea and vomiting).

In the studies with patients who were diagnosed with Alzheimer’s disease and other dementias, these drugs are modestly effective and can reduce agitation, aggression, along with some psychotic symptoms like hallucinations and delusions.

Possible side effects to antipsychotic drugs

Common side effects include sedation, unsteadiness (potentially leading to falls), as well as stiffness and tremor that appear like Parkinson’s disease.

Of greater concern however, and what has led to considerable controversy in the medical community, are an increased risk of stroke and death. As a result of these two potential effects, Health Canada issued warnings to physicians about the use of this class of drugs in older patients with dementia. In one study, which used data from the Food and Drug Administration (FDA) in the USA, the percentage of patients who died while taking an antipsychotic was 3.5% compared with 2.3% of the patients who were taking a placebo. Presented in another way, the risk of death was approximately 1 in 100 individuals treated with an antipsychotic over a period of about 12 weeks in these studies. So, with the risk of stroke and death, should physicians ever recommend these drugs, and should caregivers ever agree to their use?

As mentioned previously, the effects of agitation and aggression are serious and can be life-threating in themselves for patients and caregivers. Treatment with non-drug therapies are not always sufficiently beneficial. Use of antipsychotics is the best studied drug intervention for agitation and aggression in dementia and have documented modest benefits.

There are few other drug treatments that have been shown to be safe and effective. All these factors imply that the caregiver, with the help of the physician, must weigh the risks and benefits of this type of treatment. Numerous professional groups including Choosing Wisely Canada have recommended that while antipsychotics should not be treatment of first choice, when the symptoms are serious and represent a risk to the patient or others in their environment, antipsychotics can be used with appropriate monitoring and with the informed consent of the caregiver.

Get informed. Ask questions.

So as the responsible caregiver, what can you do to ensure you make a reasonable, informed choice? I suggest you ask the physician the following questions:

• Why are you recommending the use of an antipsychotic, and what are the symptoms you hope to improve?
• What non-drug therapies have you already tried?
• Are there any other drug therapies besides antipsychotics that could be tried first?
• Does the patient have any medical conditions that would make the known side-effects of antipsychotics any more likely or serious?
• If I approve of their use, what type of dosages do you propose to use and how will you monitor their effects and their side-effects?
• Once the patient improves, what is the plan to taper and discontinue these drugs?

Asking these questions and working with the health care team, can help you and your family make an informed decision if antipsychotics become a recommended treatment.

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Answer: Don’t try this one at home!

Alzheimer’s disease and other dementias are best known for their effects on memory, cognitive functions and activities of daily living. What is less well known are the effects these illnesses can have on behavior, also referred to as “neuropsychiatric symptoms”. Neuropsychiatric symptoms like depression, anxiety, apathy and psychosis can be extremely distressing to the person with dementia and can lead to increased burden and stress for the caregiver. Some of the most significant disturbing symptoms include agitation and aggression, which occur in about 25% of patients at some point in their illness. Agitation and aggression are even more common and serious in individuals who reside in nursing homes as these individuals have more severe dementia and have often been institutionalized because their caregivers can no longer deal with their challenging behaviours. Medical treatments for agitation and aggression are only modestly effective, and some of the most effective treatments (e.g. antipsychotic medications) are often associated with serious side-effects, including an increased risk of stroke and death.

For a number of years, researchers and lay people have wondered about the use of cannabinoids (the more appropriate term for marijuana) for Alzheimer’s disease, given their ability to reduce anxiety and aggression in the general population. Pre-clinical studies of cannabinoids in Alzheimer’s disease have even suggested a potential benefit on how the disease affects the body, possibly due to their anti-inflammatory effects. This being the case, wouldn’t cannabinoids seem to be the perfect drugs to treat agitation and aggression in Alzheimer’s disease patients?

My research group at Sunnybrook reviewed all of the literature that was previously published on cannabinoids and Alzheimer’s disease, and were amazed by how little evidence was available on its use. At the present time there have been only a small number of studies, with less than 150 patients with Alzheimer’s disease included in these trials. Many of these studies had negative outcomes and were unable to show any benefit on agitation and aggression in this specific patient population.

The lack of data encouraged us to design and run a study of our own at Sunnybrook, funded in part by the Alzheimer’s Society of Canada, The Alzheimer’s Drug Discover Foundation and the Canadian Consortium on Neurodegeneration and Aging. It included moderate- to severely-cognitively impaired people living in both the community and long-term care residences, who were given either nabilone for the treatment of agitation  and aggression or placebo. Nabilone is a synthetic marijuana that is approved by Health Canada to treat nausea associated with chemotherapy. By comparing the effects of this drug with a placebo, we hoped to see if the drug reduced agitation without causing significant side effects. Because cannabinoids have also been shown to help with pain and increase appetite, we hoped to see improvements in these symptoms as well, which can be significant problems for people with Alzheimer’s disease. Pain and weight loss also appear to be closely linked to agitation and aggression, so treating all of these symptoms with a single treatment might improve the quality of life for people with dementia. We have just completed the study and will begin examining the results of our trial shortly.

While we are hopeful that our study will provide guidance for physicians on the use of cannabinoids for Alzheimer’s disease, I do not recommend their use at the present time. Not only is there insufficient evidence to recommend the use of medical marijuana or any other cannabinoids, but I am also concerned about potential side effects as well as problems administering these drugs. For example, these drugs are well known to cause drowsiness and may increase the risk of falls. They might increase the chances of patients with Alzheimer’s disease developing psychotic symptoms like hallucinations and delusions. Finally, given that medical marijuana has such incredible variability in the types and strengths of their active chemical ingredients, one can never be sure that today’s “dose” will be similar to tomorrow’s.

While we hope our research will determine the possible benefit and safety of cannabinoids for Alzheimer’s disease, for now, I don’t believe it is ready for “prime time”. But stay tuned!

Update:

The first clinical trial involving a synthetic cannabinoid for treatment of agitation in people with Alzheimer’s disease has been completed. View the findings.

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Answer: Hopefully not! Sleep problems in patients with Alzheimer’s disease and other dementias are extremely common and probably occur in up to 50 per cent of patients. In normal aging adults, sleep becomes lighter and there are more frequent awakenings. In patients with dementia however, these changes tend to be more severe, with problems falling asleep and maintaining sleep. More rarely, but common in dementia with Lewy bodies, there can be unusual sleep behaviours including the acting out of dreams. Some patients can exhibit complete day-night reversal, where they are up all night and sleep most of the day. It is not hard to imagine how sleep problems in patients with dementia lead to increased caregiver distress, depression and increase the risk of institutionalization.

Sleep hygiene

Insomnia in dementia is extremely difficult to treat. Typically, treatment begins with sleep hygiene techniques which include avoiding day-time napping, following regular bed and rising times, ensuring a quiet and comfortable sleep environment, avoiding caffeine etc. Unfortunately, these techniques which work so well in otherwise healthy elderly adults, are often insufficient to improve sleep in patients with dementia. Increasing daytime activities and exercise can be helpful. Bright light therapy, using specialized bulbs or light panels, might also be helpful for some patients, but this has not been confirmed in large rigorous clinical trials.

Medications

Medications are unfortunately used far too frequently to treat insomnia in dementia, even though their effectiveness is largely unproven and their potential side effects are considerable. Patients with dementia should not be treated with standard sleeping pills. The sleeping pills that are available over the counter in pharmacies are typically made with sedating antihistamines which have a prominent side-effect called “anticholinergic” effects which can worsen memory in patients with Alzheimer’s disease and actually counteract the effects of the standard anti-dementia drugs. The most common prescription sleeping drugs are benzodiazepines (drugs like Valium and Ativan). Besides being addictive and leading to falls in the elderly, they too can lead to worsening of memory and cognition in patients with Alzheimer’s disease.

Another increasingly common and problematic treatment for insomnia in patients with dementia is the use of antipsychotic drugs, especially quetiapine (Seroquel). These drugs are completely unproven as sleeping medications for dementia, and carry with them the risks of stroke and even death. Some physicians will use sedating antidepressants like mirtazapine (Remeron) or trazodone. While there is one small positive trial of trazodone, use of these antidepressants may also increase the risk of falls in the elderly with dementia.

Finally, the use of melatonin – a hormone associated with sleep and wakefulness regulation and can be taken in the form of supplements – remains somewhat controversial. While a recent review of the small number of published trials in dementia suggested some benefit and good tolerability, most clinicians have not found it very helpful.

Exercise and activities

Insomnia and sleep disorders in patients with dementia are common problems that can have prominent negative effects on caregivers. At present, the best recommendations suggest that drugs should be avoided, and patients should be treated by instituting good sleep hygiene, increasing daytime exercise and activities, and ensuring exposure to lots of natural daytime sunshine.

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Answer: This is one of the more common questions I get asked as a dementia specialist. Similarly, there are numerous families that come to me on the first visit, convinced that their relative’s dementia started immediately after some type of surgery. So, does surgery cause or worsen dementia?

There have been numerous studies over the years that have attempted to answer this question. Unfortunately, the results are often conflicting, with some studies showing an increased risk of dementia and/or cognitive impairment (a decline in memory and thinking skills) following surgery, and others suggesting no increase risk. As you might imagine, the reasons for these discrepancies are that the results likely depend on a multitude of factors including the characteristics of the patients (age, medical conditions, medications, pre-existing cognitive impairment), the type of condition requiring surgery (including emergency or elective), the type of surgery, the anaesthetic (general or local) and the operative complications (e.g. blood loss or infection).

With these conflicting results in mind, there are many reasons to be concerned about the potential effects of surgery on cognition. Surgical procedures generally lead to inflammation and immunological responses that can negatively affect the brain. During surgery, blood flow to the brain may be impaired because of changing fluid levels or blood loss. Some surgical procedures might directly increase the risks of small strokes. Some anaesthetic drugs have potential to impair memory and cognitive function. Following surgery, pain and medications used to treat pain and other operative complications could impair cognition.

Perhaps the greatest threat to cognition is the common post-operative complication of delirium. Delirium is an acute confusional state where the patient will appear disoriented, unable to focus or concentrate, present with severe memory problems and might have a variety of emotional issues including hallucinations, paranoia, anxiety, agitation and depression. These symptoms appear suddenly after surgery and can wax and wane over several days. The risk factors for post-operative delirium include greater age and pre-existing cognitive impairment (and dementia). Delirium is associated with greater lengths of hospital stay, increased risk of institutionalization and death. While cognition often improves after delirium resolves, delirium is also associated with worsening of pre-existing cognitive impairment and dementia. Treating and preventing post-operative delirium is therefore crucial.

Unfortunately, surgery is often unavoidable, and in those instances, patients and caregivers may have very little choice in whether to proceed or not. In cases where the proposed surgery is more elective, patients and families will need the assistance of their physicians to evaluate the relative risks and benefits of proceeding with the operation. In all cases, making sure the surgeon and the anaesthesiologist are aware of pre-existing cognitive impairment or dementia are essential. This knowledge will help guide the choice of anaesthesia and allow the team to monitor for post-operative delirium and treat as aggressively as possible in an attempt to limit poor cognitive and functional outcomes.

The story of surgery and dementia is not all negative. In a future blog, I will highlight some surgical procedures that might actually improve cognition and examine new ways that might specifically help protect the brain during operations.

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Answer: Your mother is experiencing a delusion. Delusions are false, fixed beliefs that cannot be explained on the basis of one’s culture or religious background. In dementia, delusions occur frequently, with up to 30 per cent of individuals experiencing delusional ideas at some point in their illness.

Delusions in dementia are most frequently paranoid or persecutory in nature, and typically involve themes of people stealing from them, or people trying to harm them (e.g. poisoning). Depending on the theme of the delusion, the person with dementia may become anxious, fearful, depressed, or even aggressive.

When delusions arise suddenly, it is always important to rule out a medical condition, like an infection, that could be causing the new symptoms. In these cases, treating the underlying medical problem, or stopping a new medication, might reduce or eliminate the delusion.

If the doctor confirms that the person is medically stable, this might be another new symptom of the illness, and suggests that the underlying dementia is getting worse. Delusions in dementia however, are not necessarily a permanent symptom of the illness, and may wax and wane throughout the course of the disease.

Dealing with delusions

The first step in dealing with a relative with delusions is to remember that the delusion is part of the illness. It is therefore crucial not to take the accusations personally or blame yourself for this behaviour. Do not become defensive or react in an angry manner. In fact, attempting to directly address the accusation and contradicting your relative, is probably the worst thing you can do, as this will only serve to focus the person’s worries even more and lead to further anger.

I typically suggest that the caregiver attempt to “derail” the person by changing the subject completely and/or distracting them with pleasurable activities, music and food. It may be necessary to try several diversions before the person will calm down. At times, asking another relative or friend to get involved, and utilize these same techniques may be helpful.

In most cases, delusions can be handled in this manner. More rarely, the delusions will be so distressing for the person, or might result in dangerous aggressive behaviours. In these cases, discussion with the person’s doctor might be necessary as medications to treat the delusions may need to be prescribed.

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Answer: Yes – you should be concerned about your loved one’s safety, but not because of harm by staff! The case of Elizabeth Wettlaufer, a former nurse who admitted to killing eight seniors in long-term care facilities in the London and Woodstock areas, is a rare event indeed. While reports of staff-on-resident abuse do occur, the majority of resident injuries from violence in long-term care are the result of resident-on-resident violence.

Most staff in long-term care are dedicated, hard working and compassionate individuals who tend to be under-paid and over-worked, given low staff-to-resident ratios. In fact, it is more likely that staff will be harmed by resident aggression than vice versa. This is because aggression and agitation are common in some patients with dementia, and residents are frequently institutionalized because their behaviour was hard for family caregivers to manage when they were living in their own homes. A recent report from the Ontario Coroner who investigates cases of death from violence, suggests that more than half of long-term care residents have a diagnosis of dementia and almost 50 per cent exhibit aggressive behaviours.

Following Wettlaufer’s admission of guilt, there were a number of calls for public inquiries into how such a thing could have occurred – but such an inquiry is really not necessary. It is well known what needs to be done to better protect vulnerable seniors in long-term care facilities from violence. First and foremost, we need better staff-to-resident ratios, better staff training, and a more enriched long-term care environment (including physical facilities like single rooms). These will lead to reduced staff-on-resident violence as well as resident-on-resident violence. Secondly, we need more and better oversight of facilities through scheduled inspections and responses to specific complaints.

Finally, as a family member, you also have a role to play. Visit or call frequently. This tells staff you are interested and concerned, and want to know what is going on at all times. It also allows you to see how care is provided, and inform staff about particular likes and dislikes that may make care easier and more comfortable. Get to know staff, the administration and the other residents. Knowledge of other residents and how they interact with your relative may help prevent difficult interactions. Get involved with Family Councils and help work towards improving the facility and the care provided.

Finally, if ever you see or suspect abuse by another resident or a staff person, whether it is your relative or anyone else, report it immediately to the staff, the administration or the Ministry of Health.

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