What you need to know about delirium in the person with dementia
Delirium is a serious illness and can be experienced by anyone, at any age.
However, seniors are more susceptible to delirium and 30-40 per cent of most people with dementia will experience an episode of delirium.
Delirium is a sudden and noticeable change in the person with dementia’s mental state. For example, the person with dementia may appear more confused than usual, may display unusual or new behaviours, or may suddenly experience hallucinations and/or delusions.
Many caregivers can miss the onset of delirium. They will notice the person with dementia is different, but may think it is because he/she did not sleep well, or is just having a bad day.
No one knows the person with dementia better than the caregiver; unfortunately, delirium is a medical emergency, and if left untreated, can lead to permanent problems.
In some cases, it can lead to death.
Delirium also increases the chance that a person with dementia, especially in the middle to late stages, will require a higher level of care.
The most common causes of delirium include:
- Infection e.g. bladder infection (UTI), pneumonia
- Constipation, fecal impaction
- Urine retention
- Traumatic event e.g. fall, fracture
- Hyperglycemia (very high blood sugar)
- Hyperthermia (high body temperature)
- Alcohol withdrawal
- Severe pain
- Reaction to medications
- Hypoxia (decreased oxygen to the brain) caused by a stroke or a seizure
It is important to remember that delirium is a change from the person with dementia’s usual state.
It also develops over a short period (usually hours to days), often fluctuates throughout the day and worse at night. To help determine if the person with dementia has a possible delirium, the caregiver should consider the following questions.
Is the person with dementia:
- Sleepier and quieter than usual or more restless and agitated?
- More confused?
- Seeing things or hearing voices (hallucinations)?
- Pacing or having sudden difficulty walking?
- Having outbursts of anger or is sad and tearful, or fearful and anxious or appears euphoric?
- Suddenly paranoid?
- Switching back and forth from hyperactive to hypoactive behaviour?
- Having difficulty reading or writing and/or paying attention?
- Believes things that are not true (delusions)?
- Talking gibberish, calling out or ranting?
If you answered yes to any of the signs, the person with dementia may have delirium and you should contact your family doctor immediately, or call 911.
How to avoid possible delirium:
- Drink fluids especially water, throughout the day. In warm weather, fluid intake should increase (dementia can cause a decreased thirst mechanism)
- Eat regular meals
- Manage diabetes
- See your doctor regularly for a medication review e.g. in the middle stage of dementia, BP can fall due to dementia related weight loss and changes in cardiac output
- Monitor urine output for any changes: no urine output, bleeding, discharge or unusual odour
- Wear clothing appropriate for the weather: hat on sunny days, coat and hat on cold days. (As we age, we lose the ability to perspire and regulate our body temperature and we become more vulnerable to cold and heat. Dementia can inhibit a person’s sensory ability to feel hot and cold)
- Prevent constipation (diet, fluids, exercise). Talk to your doctor if you need laxatives
- Make the home environment safe to reduce risk of falls and injury: non-slip bath mat, lighting.
If medical attention is sought quickly, delirium can be treated and most people with dementia usually get better over a few days to a few weeks. For others, it may take up to a year for the delirium to clear.
Unfortunately, in the person with dementia, delirium can result in a worsening of the person’s cognitive function. For example, the person may no longer be able to do tasks he/she could do before the onset of delirium, such as dressing or bathing or walking independently.
However, on a positive note, studies indicate that the risk of delirium in people with dementia can be significantly reduced if they and their caregivers implement strategies to reduce the risk of delirium and know when to seek medical attention.
What you need to know about the 5 most common types of dementia
Dementia is an umbrella term that describes a progressive, neuro-degenerative disease causing deterioration in mental ability and function, accompanied by changes in behaviours and personality.
While dementia mainly affects older people, there is growing evidence that that at least eight to 10 per cent of cases develop in people ages 40-65 years: frontotemporal dementia, early onset Alzheimer’s disease.
More than 46 million people live with dementia worldwide:
- Asia — 22.9 million
- Europe — 10.5 million
- The Americas — 9.4 million
- Africa — four million
By 2030, this number is estimated to increase to 74.7 million and to 131.5 million by 2050. Around the world, one person is diagnosed with dementia every three seconds (World Health Organization, 2016).
The human brain is an enormously complex structure made up of grey matter and white matter, which is found throughout the brain: frontal lobes, temporal lobes, parietal lobes, occipital lobes and cerebellum. Within these lobes are three important areas: hippocampus, limbic system and mid brain.
Grey matter is composed of nerve cells (neurons) that communicate with each other by a chemical transmitters (dopamine) situated on the surface of the other neurons involved in regulating memory, mood, sleep, appetite, behaviour.
The supporting grey matter (glial cells) supplies nutrients to the neurones and repairs damage. This is very important because, neurons cannot reduplicate themselves and need to be maintained throughout a person’s entire life span.
White matter consists of fibres that connect neurones in different parts of the brain to one another allowing rapid communication. These fibres enable neurons to influence the activity of thousands of other neurons in the brain.
- Frontal lobes influence speech, personality traits, decision making, judgement, behaviours.
- Temporal lobes regulate memory and mood, the understanding of language and meaning
- Parietal lobes are involved in motor tasks (cooking, dressing), tactile and visuospatial perception of self and the outside world e.g. location
- Occipital lobes are at the back of the brain and process visual stimuli
- Cerebellum is set underneath the main part of brain: controls motor function, language, executive function and working memory
- Hippocampus: learning of new information
- Limbic System: memory, behaviour, emotions
- Mid-brain: sleep, appetite, sexual function
Damage to any of these areas will result in the person with dementia developing symptoms specific to that area e.g. limbic system – person may start misplacing items, become suspicious.;
parietal lobe - person may become lost in own home.
The 5 most common dementias are:
- Alzheimer’s disease
- vascular dementia
- Lewy body dementia
- Frontotemporal dementia
- Wernicke-Korsakoff’s syndrome
- Caused by destruction of neurons due to amyloid plaques and neurofibrillary tangles
- Damage to limbic system and hippocampus occurs first, then other areas of brain
- Progressive deterioration in ability to do activities of daily living: dressing, bathing
- Memory problems, communication difficulties, behavioural and mood disorders
- Other possible symptoms: insomnia, incontinence, weight loss
- Usually caused by bleeding/blockages in the blood vessels in the brain e.g. stroke
- Or by multiple, very small strokes
- Can occur with other types of dementia e.g. Alzheimer’s disease
- Early sign is loss of executive function: plan, organize, respond
- Problems such as decreased mobility, balance problems, depression, urine incontinence are more common
- Periods of relative stability then a sudden decline, then stability
- Potential risk factors include high BP, high cholesterol, obesity, smoking, diabetes
Lewy body dementia:
Often mistaken for other dementias, e.g. Parkinson’s dementia
- Presence of Lewy bodies: tiny spherical protein deposits that develop inside nerve cells in the areas of thinking, memory and movement
- Fluctuating cognitive impairment: periods of increased confusion & windows of lucidity
- Hallucinations or delusions occur frequently and can be quite detailed
- Spatial disorientation e.g. falls, fainting
- Tremor, rigidity and slowness of movement
- Highly sensitive to neuroleptic drugs: Risperidone
- Most common form of younger onset dementia
- Affects frontal lobe in brain which controls behaviour and impulse control
- Mood changes, inflexibility, impulsivity,
- Hyperorality: excessive smoking or drinking, food fads, putting objects in mouth
- Changes in behaviour: disinhibition, lack of judgment, loss of social awareness, loss of insight
- Memory changes occur later
- Caused by excessive and prolonged alcohol intake
- Severe vitamin B1 (thiamine) deficiency causes build up of toxins and bleeding into parts of the brain - Wernicke’s Encephalopathy
- Symptoms (in the absence of intoxication) include: severe confusion, ataxia (walk with feet spread wide apart) and abnormal movement of the eyes
- Wernicke’s is a medical emergency requiring immediate treatment
- If treated early, most people will recover, however some will develop Korsakoff’s Syndrome
- Symptoms of Korsakoff’s include: retrograde amnesia, confabulation (elaborate made up stories), difficulty learning new information, lack of insight and general disinterest in things
- With prolonged abstinence from alcohol, there may be a partial recovery in symptoms
Other dementias include:
- Parkinson’s Disease with dementia
- mixed dementia
- Chronic Traumatic Encephalopathy
- Progressive Supranuclear Palsy
- Neuro-Syphilis dementia
- Progressive Non-Fluent Aphasia.
No disease requires as much informal care as dementia.
Some say caring for dementia patient is like a living bereavement. From the moment of diagnosis, your life changes, your role changes, you are now a caregiver and you are about to embark on a journey filled with many highs and lows.
One minute you may feel happy, in control and calm and the next moment you may start crying and feel overwhelmingly sad, frustrated, angry and helpless.
These are all “normal” reactions to caring for a person with dementia and you are not alone. Being a caregiver is an enormous responsibility, and it can have a detrimental impact to your physical and emotional health and well-being.
As a caregiver, you do the very best you can every day, and some of those days will be good and other days not so good. But, if you want to continue to care for the person with dementia, then it is very important that you look after yourself and accept some help.
What you need to know:
- Continue with any hobbies/interests
- Continue visiting with family/friends
- Follow a healthy diet, exercise and take care of your own health concerns
- See your doctor regularly
- Prioritize tasks and know your limits
- Try to focus on the good things, even on the difficult days
- Never compare yourself to others; there is no right or wrong way to care
You should take a break often, whether it is a few hours or a few days; time away from caregiving can help you relax and feel energized.
You should connect with the Alzheimer Society of B.C. online at alzheimer.ca/bc or call 1-800-667-3742. Supports offered include First Link dementia support, caregiver support groups and the Minds in Motion program.
You should consult Interior Health if you need respite or assistance with caring for the person with dementia (bathing, medication assistance, incontinence issues) and/or managing behavioural symptoms (aggression, wandering).
Services offered include caregiver support groups, adult day services, nutrition assistance, respite and home support
On bad days, reach out and talk to someone: family, friends, neighbours, your doctor, the local health unit or call First Link Dementia Helpline at 1-800-936-6033.
If you feel you are in danger or the person with dementia may harm self or others, call 911 immediately
Helpful questions to ask yourself:
- Do I have an emergency plan?
- If something happens to you, who needs to be contacted? Who can take care of the person with dementia?
- Document and share the plan with your family, doctor, health-care team and anyone else you want to tell.
- If you are unable to drive, do you have transportation e.g. friends, taxi, HandyDART?
- Is there someone who can assist with home/garden maintenance, or housekeeping if needed?
- Do you require financial assistance, or help with taxes, or completing legal paperwork e.g. power of attorney?
Throughout my 35 years of working with people with dementia and their caregivers, not one person has said they regret being a caregiver; however, many wish they had taken better care of their own physical and emotional health and been more receptive to accepting help.
Being a caregiver is one of the most difficult and undervalued jobs you will ever do, but—if you try and take care of yourself and accept some help—caring for the person with dementia can also be a rewarding experience.
What you need to know about the best aspects of being a caregiver:
- It provides companionship
- It can give you a sense of fulfillment and pride
- It can be meaningful and gives you a sense of purpose in life
- It enables you to give back to someone who has cared for you
- It gives you the opportunity to be in the moment with the person with dementia, and to cherish and embrace those moments, however fleeting
- It will enhance and improve quality of life for the person with dementia
By Tracey Maxfield
Finding out you have dementia can be upsetting and frightening for the person with dementia, the caregiver and the family.
Suddenly, the life path you were on has now changed direction.
Your hopes and dreams for the future may seem unattainable; you may feel helpless, hopeless and lost, but what you need to know is that you are not alone, and it is still possible to live a good life with dementia.
The key to living a good life is:
- to become informed; knowledge is power
- to talk with your caregiver/family
- to plan for your future
- to take control of your life
If you let it, dementia can take over your identity and your life. Never forget, you are a person with dementia, and you can have a life with dementia.
What you need to know:
The type of dementia that you have e.g. Alzheimer’s disease, vascular dementia:
- Will dementia medication help e.g. cholinesterase inhibitors (Aricept, Exelon, Razadyne, Memantine); this medication, whilst not curative, may slow the progression of dementia
- What symptoms might you develop next
- When should you follow up with the doctor
- What resources and support services are available to help in your area
- What financial, legal and health care planning needs to be done
- That you should continue to eat healthy, exercise, take any prescription medications, socialize, and look after yourself
If you feel overwhelmed, anxious, or scared and need someone to talk to, you can call the First Link Dementia Helpline at 1-800-936-6033 (Alzheimer Society of BC).
As you try to understand what a diagnosis of dementia means to you and your caregiver and how it will change your life, you will have many questions and concerns.
You will likely want to learn more about your type of dementia, and what education and supports are available to you and your caregiver.
There are many on-line sites available to help the person with dementia, and it is important that any information you read is correct and comes from a trusted and audited website.
Below are websites that people with dementia and their caregivers have found to be the most helpful and informative.
What you need to know:
For helpful information, education and resources on dementia:
For advice and support written by caregivers for the caregiver and family:
Family Caregiver Alliance family.caregiver.org
For real life experiences about living with Lewy body dementia (N. McNamara) and caring for the person with dementia (S. Macaulay & L. Hirsch):
For information on community supports/resources, housing, transportation, finances:
Kelowna and Lake Country
Seniors Outreach Society seniorsoutreach.ca; 250-861-6180
West Kelowna and Peachland
Westside Health Network Society westsidehealthnetwork.com; 250-768-3305
Nexus Community Resource Centre nexusbc.ca; 250-545-0585
Penticton and Area Access Society accesscentre.org; 250-493-6822
Seniors Resource Centre [email protected]; 250-832-7000
The Centre for Seniors Information www.csikamloops.ca 250-828-3653
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