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Dementia Aware  

Dementia and driving

What you need to know about driving when you have dementia

Driving is a complex activity involving many regions of the brain working simultaneously.

Due to the progression of brain damage, the person with dementia gradually loses the ability to drive safely, and recent studies reveal that people with dementia are four to seven times more likely to have a driving accident .

Perhaps one of the most difficult decisions a person with dementia will face, is when to give up driving. The ability to drive and go anywhere is liberating; driving is the epitome of freedom, control and independence.

Not being able to drive is a blow to one’s pride, to selfhood and social identity.

This does not mean that upon diagnosis, the person should stop driving immediately. Studies show as many as 76 per cent of people with mild dementia can pass a driving test and can safely drive (Iverson, 2010).

But over time (three to six months after diagnosis), when the person’s insight about driving ability and other important issues is strongest, the caregiver and doctor should initiate a discussion about driving.

The discussion will likely not be easy, and there may several discussions. The person with dementia needs time to understand why, to grieve the loss of freedom, independence and control, to consider options, talk with friends or other people with dementia.

It's important to remember to treat the person with dementia with dignity and respect, and his/her feelings are supported and acknowledged. We want to empower and encourage the person with dementia to make the decision to stop driving.

Signs a person with dementia may have problems driving:

  • Accidents
  • Driving less
  • Road rage
  • Traffic violations: people over 70 with two or more tickets in past three years were more likely to have a motor vehicle crash (Knopman, 2010)
  • Becomes lost on a familiar route
  • Running red/amber lights
  • Parking illegally e.g. fire hydrant
  • Avoids driving at nighttime or in the rain
  • Makes unsafe driving decisions e.g. overtakes car on a corner

Helpful suggestions:

It may be helpful to ask your doctor to complete a SIMARD MD driving test (recommended by the Alzheimer’s Society of BC).

This test enables the doctor to identify people with cognitive difficulties that compromise the ability to drive safely. It is recommended that the test is administered upon diagnosis, when there is a significant decline, and at least every six months for a person with dementia who is still driving.

The test comprises four parts:

  • Word repetition and recall
  • Number conversion exercise
  • Name items sold in a grocery store in one minute
  • Recall of words from first exercise

Some people with dementia and caregivers have found it helpful to review different transportation options and start using them so the person with dementia feels comfortable and can incorporate into his/her routine.

A word of caution about making a signed plan/contract that identifies when person with dementia will stop driving e.g. an accident, help walking, etc. While this plan helps the caregiver decide when the person should stop driving, when it is time, the person with dementia will likely have forgotten the plan and refuse to cooperate.

This can create more tension and stress between the person with dementia and caregiver.

The fact is, that even as the dementia worsens, and/or accidents increase, most people with dementia will deny they are a danger on the road and will refuse to stop driving. This means that the decision to stop the person from driving falls to the caregiver and the doctor.

What to do if the person with dementia refuses to stop driving:

  • Every healthcare practitioner has a responsibility to report to the Office of the Superintendent of Motor Vehicles (OSMV) a person who has a health condition that impairs the ability to drive safely. 
  • If you have concerns about a person’s ability to drive, write a letter explaining your reasons to the OSMV
  • Ask your doctor to complete the SIMARD MD screening test on the person with dementia. If the results show the person should not be driving or the results are inconclusive, the doctor must report the findings to the OSMV. This assessment should be repeated every six months.
  • OSMV may refer person to be tested by DriveABLE: computer test to assess cognitive abilities. If the assessment is inconclusive, an on-road test will be given. Please note, if OSMV refers the person to DriveABLE, there is no fee; however, if the doctor refers a person to DriveABLE, the fee is $300.
  • If the person with dementia is not fit to drive, OSMV will send a letter and revoke his/her driver’s licence
  • If the person with dementia is deemed fit to drive, OSMV may still request the doctor reassess the person every six months.

Strategies to prevent use of car:

  • Remove car keys or substitute other keys
  • Park car in another location e.g. friend’s garage
  • Sell the car
  • Disable car: disconnect battery, remove distributor cap etc.
  • Caregiver/family member drives
  • Other transportation e.g. taxi, HandyDart
  • If vehicle is disabled, ensure person with dementia does not contact tow company

Resources:



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Dementia and falls

What you need to know about falls risk in people with dementia

Falls are a major reason why many older people lose independence and mobility, and people with dementia have twice the risk of falling compared to people without dementia.

Falls can result in fractures to limbs (arms/legs) and/or head injury, and people with dementia are three times more likely to sustain a hip fracture that may require surgical intervention and the potential complications of delirium, immobility (Tinetti et al., 1988).

Once a person has fallen, the chance of falling again doubles. Therefore, preventing falls in people with dementia is an important aspect of their care.

Across North America, every 11 seconds, one person, age 65 years or older, is treated for a fall in the emergency department. This means, on average, 7,855 older people fall daily, and of those falls, 20 per cent cause serious injury, even death.

The risk of falls associated with dementia in the older person, may be caused by four main factors:

  • Physical changes
  • Cognitive changes
  • Environmental
  • Medications

Physical Changes

  • Weaker bones, decreased strength, muscle loss due to aging process
  • Decreased energy due to inactivity and/or pre-existing health condition e.g. arthritis
  • Loss of flexibility in joints, increased pain/stiffness especially hips and ankles
  • Impaired balance reactions due to slower brain processing
  • Dementia is associated with impairment of cardiovascular reflexes that help maintain blood pressure (BP) when standing
  • People with Lewy body dementia and Parkinson’s dementia are at an increased risk of falling due to significant gait changes
  • People with frontal lobe vascular lesions are at high risk of falling due to impulsivity
  • From the middle to advanced stage of dementia, there is a noted decline in strength, balance and walking ability  

Cognitive Changes

  • Impulsivity
  • Poor judgment e.g. walking on an icy path
  • Cognitive impairment affects the capacity to judge depth and distance between objects e.g. sit down in gaps between chairs
  • Misprocessing of information e.g. black rug on white floor  
  • Sensory changes (see article Dementia and the Five Senses)

Environment

Most falls leading to serious injury and/or death, occur at home or in the garden. The most common areas are:

  • Stairs
  • Bathroom
  • Kitchen
  • Bedroom
  • Garden

Hazards:

  • Poor lighting
  • Hoarding/clutter
  • Badly placed furniture, power cords, loose carpeting, curled edges of rugs
  • Ill fitting clothing, inappropriate footwear
  • Chairs which tip over, step stools
  • Rugs that slide, unstable hand rails
  • Wet floors, spillage
  • Uneven paving, loose gravel
  • Ice/wet leaves on pathway
  • Family pet
  • Items placed out of reach

Medications

Many common medications have side effects that are associated with an increase in falls risk.

Therefore, it is very important to have your doctor and/or pharmacist review all possible side effects and medication interactions when taking any new medications. Important tips include:

  • Do not mix medication with alcohol. People who consumed more than five drinks daily, or seven weekly, are seven times more likely to have fallen in the past year and six times more likely to forget their medications (Wilner, 2013)
  • Do not stop taking a medication without telling you doctor
  • Talk to your pharmacist/doctor before taking herbal or over the counter medication

Psychoactives:

A recent study of 20,852 older people in Germany identified anti-depressants, sedatives and hypnotics as major contributors to an increase in falls risk (Wilner, 2013). These medications cause drowsiness, worsen confusion and affect brain function:

  • Benzodiazepines: Ativan, Valium usually prescribed to help with anxiety and sleep
  • Non-benzodiazepines: Ambien, Lunesta (sedative hypnotics)
  • Antipsychotics: Risperdal, Seroquel, Zyprexa, Haldol are usually prescribed for difficult behaviors e.g. aggression
  • Anticonvulsants: Neurontin is a seizure medication (epilepsy) often used to treat nerve pain
  • Mood Stabilizers: Depakote is sometimes used to manage antisocial behaviours in dementia
  • Antidepressants: Zoloft, Effexor, Celexa are used to treat depression with anxiety. Trazadone is usually given as a sleep aid
  • Opioids: Codeine, Morphine, Fentanyl used to treat pain; side effects include drowsiness and confusion

Anti-cholinergics:

This group comprises many drugs that can be prescribed or purchased over the counter. Anticholinergics should be used with great caution as they have many side effects including drowsiness, poor coordination, confusion, double or blurred vision, agitation, irritability and hallucinations.  

  • Tricyclic antidepressants: Elavil, Pamelor
  • Overactive bladder medications: Ditropan, Detrol
  • Vertigo/nausea medications: Antivert, Dramamine
  • Anti-itch medications: Vistaril
  • Muscle Relaxants: Flexaril
  • Antihistamines: Benadryl, cold/sinus medications, and pain relievers e.g. Nyquil, Tylenol PM

Medications that affect blood pressure:

These are drugs that can cause a sudden drop in BP or worsen an already low BP. Low BP can make someone weak, faint, and/or dizzy which increases falls risk.

Antihypertensives: Atenolol, Norvasc used to treat high blood pressure
Alpha-blockers: Flomax, Cardura which help men with an enlarged prostate urinate

 Medications that lower blood sugar:

The aim of taking a drug to manage diabetes is to lower the blood sugar. However, if the blood sugar falls too low (hypoglycemia) it can cause dizziness and confusion which can increase a person’s risk of falling.

Sometimes, the person with dementia may not know how he/she fell, or may fall when no one else is around. To help determine what may have happened, some caregivers have found it is helpful to ask these simple questions:

  • What was the person doing?
  • Getting out of chair
  • Where did the fall occur?
  • In kitchen
  • How did it happen?
  • Chair too light and fell back


Dementia's final stage

What you need to know about caring for someone in the final stage of dementia

Research indicates, that following diagnosis, the average life expectancy of a person with dementia is five to 10 years, depending on the type and severity.

Over time, the person with dementia will experience a gradual decline in their ability to perform everyday functions and become more dependent on others to care for, and to provide the essential necessities of life e.g. food, fluids.

Our job as human beings is to preserve the person with dementia’s quality of life until the end as best we can (Whitehouse, 2006).

Final stage of dementia

In the third and final stage of dementia (also known as late stage, advanced, or end stage), cognitive functioning is grossly impaired and symptoms are usually severe. The person with dementia will likely have difficulty with:

  • all aspects of personal care
  • eating and drinking
  • may be incontinent of urine and stool
  • mobility, including sitting up in a chair, some may even be bed bound
  • unpredictable mood swings and strange behaviours
  • recognizing familiar objects e.g. chair, cup
  • remembering occurrences e.g. meals, family visits

Nursing home Care

The person with dementia will require total care 24 hours a day, every day. The pressure of caring for a person with dementia is exhausting, and can result in sleep deprivation, disrupted eating, increased stress, muscoskeletal injury, and can severely compromise the caregiver’s emotional health and wellbeing. 

Unfortunately, many older people dread being "put away" and caregivers and families often carry on caring for the person with dementia in the face of enormous difficulties to avoid placement in a home.

However, sooner or later, every caregiver of a person living with dementia faces the gut-wrenching question: should I put my loved one in a nursing home? Such a move may not necessarily be what the person with dementia or caregiver wants, but one of necessity and safety.

Reasons may include:

  • Up all night
  • Leaving the home at all hours and becomes lost
  • Frequent falls
  • Fecal incontinence
  • Escalating health needs (person and/or caregiver)
  • Difficult or unsafe behaviours
  • Appropriate care from family or within the community may not be available long-term
  • Private care is too expensive
  • You are alone

It is not your fault; do not blame yourself. Even if you made a promise that you would never put your loved one in a nursing home, imagine for a moment, that he/she could have foreseen the future and the challenges you face.

Ask yourself, would he/she still expect you to continue? I imagine the answer would be no.

Yes, the move will be heartbreaking and very difficult, but you can still help the person with dementia to maintain his/her identity, enhance self esteem, independence and quality of life in his/her new home.  

End of life care

Facing and experiencing dying are inevitable for people diagnosed with dementia. While dementia does not cause death directly, an increased vulnerability makes death by other causes more likely.

For example, 50 per cent of people with dementia die of a respiratory illness (pneumonia), while cardiovascular related deaths are higher in people with vascular dementia.

One of the most difficult problems for caregivers and families are decisions they must make at the end for the person with dementia.

If the person with dementia has already completed an advance care plan (representation agreement/advance directive) then his/her wishes will be followed. However, if there is no advance care plan, then a temporary substitute decision maker will be appointed to make healthcare decisions for the person.

In the very end stages of dementia, the person may:

  • be unable to swallow
  • lose the ability to speak
  • lose facial expression
  • no longer recognize loved ones
  • be unconscious

During this time, it is essential that pain and symptoms are managed, and psychosocial and spiritual support is provided to the person with dementia, caregiver/family. Ensuring the practice of the person’s faith is supported can help maintain the person’s dignity and selfhood, and be of great comfort to caregiver and family.

Recognizing a person’s spirituality is a way of recognizing the person’s true individuality in a manner that can be sustaining and supportive (Hughes, 2011).

Transfer to hospital and the associated risks and benefits should be considered prudently in relation to the person’s prognosis. Similarly, transfer to Hospice is not usually required if the person is in a care home as staff are trained to provide end of life care.

When the person with dementia dies, there is a mixture of relief, sadness, grief and regret. Sadly, for the caregiver, he/she must now complete the final phase in the dementia journey, the bereavement stage alone.

Some caregivers find that they have grieved the loss of the person with dementia for so long, that they don’t have strong feelings of grief upon death.

However, others will experience a range of emotions including depression, numbness, shock, feelings of isolation and loneliness and even a loss of identity and purpose in life. Whilst these feelings are a normal part of the grieving/bereavement process, it is important that caregivers not withdraw and isolate themselves from friends and family.

Talk to your doctor, a grief counsellor, your religious/spiritual adviser or contact:

  • B.C. Bereavement Helpline at 1-877-779-2223
  • www.newhopegrief.org offers information about counselling, workshops and support groups for adults, children and families
  • www.MyGrief.ca developed by families and grief experts


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Dementia and the I word

What you need to know about managing incontinence in the person with dementia

One of the many challenges that people with dementia face as the dementia progresses is the inability to control urination and bowel movements (incontinence).

Approximately 60-70 per cent of people with dementia will develop incontinence, with urine incontinence occurring first and then, as the dementia progresses, fecal incontinence.  

Many caregivers state that fecal incontinence is one of the most challenging things to deal with and it is one of the main reasons why a person with dementia may have to move to a nursing home.

Caring for a person with dementia who is incontinent is emotionally and physically exhausting. For the person with dementia, there is a loss of dignity and self worth. There may also be feelings of shame and embarrassment, disgust, despair and frustration.

Incontinence can affect social relationships and sexuality resulting in withdrawal, depression and behavioural issues.

The person with dementia may:

  • Hide soiled pads, underwear, clothing out of shame and embarrassment
  • May try to flush soiled products down the toilet
  • Refuse to wear pads or adult briefs
  • Become angry and combative when caregiver tries to clean him/her
  • Place hands down soiled underwear

There are many reasons why the person with dementia may experience incontinence:

  • Medical problem: bladder infection, constipation, prostate enlargement, prolapse, medications such as diuretics, blood pressure pills, sleeping pills, antidepressants
  • Difficulty getting to bedroom: clutter, poor lighting
  • Unable to find bathroom
  • Unable to move quickly enough: mobility issues
  • Difficulty with undoing belt or zipper, pulling down underwear
  • No longer recognizes the need to urinate and defecate

Environmental changes that may help:

  • Easy access to bathroom: remove obstacles, good lighting, leave door open
  • Cover mirrors if person with dementia finds them disturbing
  • Adaptive equipment: raised toilet seat, bedside commode, grab bars
  • Cover mattress with protective plastic sheet
  • Use absorbent soaker pads, also called bed pads or under pads, on top of bed sheet and on chairs and car seat
  • Place sign on bathroom door for easy identification
  • At night, leave bathroom light on
  • Ensure wash cloths and continence products are within reach

Management of incontinence:

  • Try a toileting schedule: upon awakening, before and after meals, at bedtime
  • Do not restrict fluids as this can lead to serious medical problems: dehydration, delirium.
  • Stop drinking fluids two hours before bedtime
  • Eat a healthy diet with plenty of fibre as it will help produce a formed stool (constipation may result in overflow liquid faeces)
  • Encourage activity: go for walks, Minds in Motion fitness program (Alzheimer Society of BC)
  • Use belts and pants with snaps or Velcro, pants with elasticated waistband
  • Maintain good hygiene, always clean area (front to back), inspect skin for any irritation, apply barrier cream (do not apply powder)
  • Replace regular underwear with pull on adult briefs
  • If not already receiving assistance from community care or private care agency, now would be a good time to ask for help
  • Report any foul smell, discharge, itching, bleeding or sores to the doctor

Sometimes, the person with dementia and caregiver are reluctant to leave their home, and this can limit their social and physical activity. This can have a negative impact on quality of life and can result in the person with dementia becoming more dependent on caregiver thus increasing caregiver stress.

Strategies that may help are:

  • Use toilet before leaving home
  • Wear vinyl underwear over absorbent brief to reduce possible leakage
  • Pack bag with change of clothes, wipes and products
  • In a public place, e.g. restaurant, locate nearest bathroom and try to sit nearby
  • If you are going to an all-day event or travelling ask your Doctor if an occlusive device (clamp to penis to stop flow of urine), or condom catheter (condom with tubing and sealed bag), or anal plug (prevent leakage of feces) is appropriate to help manage the incontinence.

There are different types of continence products available for men and women: vinyl pull on underpants, adult briefs, overnight pads, male guards and disposable absorbent pads. 

These products can be purchased at pharmacies, Costco and grocery stores. The most popular brands are Depends and Tena, although many stores will offer a NoName brand.

When choosing a product, ensure it is the correct size and appropriate absorbency.

Prices vary between stores, and depending on the frequency of pad/brief changes per day, it can become quite expensive; however, coupons and free samples of products are available at:



More Dementia Aware articles

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About the Author

Tracey Maxfield, RN, BSN, GNC(c), DDS, is a dementia educator, consultant and advocate with over 35 years working with dementia populations in the U.K. and Canada.

She has worked in a variety of heath-care settings: acute care, palliative care, community care, residential care, physicians offices and community health centres.

Tracey has appeared on the U.S. radio shows Caregivers With Hope and Alzheimer’s Speaks, and has a dementia column in an on-line medical and holistic magazine, The Scrutinizer. 

She is a the Purple Angel Dementia Ambassador for the Central Okanagan, and sits on the board of directors for Seniors Outreach Society, and is a committee member of the Better At Home program.

She can be reached at [email protected].



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The views expressed are strictly those of the author and not necessarily those of Castanet. Castanet does not warrant the contents.

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