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Dementia Aware  

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


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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


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:



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Dementia and sex

What you need to know about intimacy, sexuality and behaviours in dementia

There is a widespread assumption that as we age, we lose our sexual allure and desire, and the thought of older people being sexually active is often joked about or thought of as just ‘icky!’

With aging, there is a lessening of libido and a drop in hormone levels that reduces sexual urges, but love, affection and a need for closeness remains.

Dementia is a monumental life event that severely impacts numerous people; no one is, however, more impacted than the romantic partner.

The diagnosis means that the relationship is changed forever.

Just as the person with dementia loses cognitive and functional abilities, many partners may also lose tangible benefits they received from the relationship:

  • companionship
  • intimacy
  • affection
  • division of household tasks.

However, the onset of dementia does not have to signal the end of a healthy sex life; most people with dementia remain sexual beings with a need for emotional security, self esteem, affection and physical closeness.

In fact, for the person with dementia, sexuality becomes a means of maintaining an identity and a way to grasp glimpses of love, and sadly, there are times, when sex or expressions of physical intimacy and closeness are the only way that the person with dementia has left to communicate with others.

Many couples find that they can still be close through their sexual relationship, even when other means of expression have diminished, and some couples find new and different ways of sharing closeness, comfort and intimacy.

Unfortunately, some partners may be so exhausted with caregiving responsibilities they are too tired to enjoy an intimate relationship, or may find that the physically intimate tasks they must perform for the person with dementia can put them off a sexual relationship.

Other partners feel a complete disconnect in the relationship as the person with dementia has changed so much and is not the same person.

For many partners, a conscious adjustment will be necessary for romantic life and/or a relationship too continue, expect less conscious acts of love, but know there will still be those subtle moments of love and closeness.

In general, dementia diminishes sexual behaviour because there is:

  • Less brain function, loss of the higher level cognitive capacitates necessary for communication of ideas and feelings. The emotional needs and desires remain; however, the expression of this need varies greatly from subtle gestures to highly inappropriate social behaviour.
  • Less testosterone
  • Less of everything to get things going

Unfortunately, in some people with dementia, when short-term memory vanishes, behaviours such as fear, sadness, happiness, anxiety and sexuality are heightened and this can be when inappropriate sexual behaviours first take place.

For example, we know that in some people with dementia (especially with frontal lobe involvement) social inhibitions falter, that psychosis and paranoia create chaos in relationships, and certain medications may lead to an increase in sexual activity, and this can leave the caregiver devastated and trying to deal with his/her own emotions.

Caregivers are blindsided by the development of unexpected sexual behaviour. Not only are they unprepared, but they also do not know how to react to it.

Also, a well-known phenomenon in people with dementia is regression to past experiences, and for many, they may regress to past sexual situations (due to neurochemical structural deterioration) and exhibit prior behaviours, e.g. same sex attraction.

When sudden, unexpected sexual behaviour begins, ask yourself if the person with dementia has:

  • Started a new medication or medication doses have changed
  • Drunk alcohol
  • An elevated blood sugar (if diabetic)
  • Possible delirium

Strategies that may help you manage the behaviours:

  • Redirection
  • Distraction

It is important to try to not take the person’s behaviour personally. Such behaviour is likely caused by difficulties and changed perceptions related to the dementia. However, do not tolerate behaviours that make you uncomfortable and/or unsafe.

Talk to your doctor or geriatric psychiatrist.

If sexual behaviour continues, then medication will likely be required.

Over time, and certainly as the dementia progresses, it is not unusual for some partners to form or want to find relationships outside their commitment to the person with dementia. This is a very difficult time, as they may encounter societal and religious pressures and feel enormous guilt.

It is important to remember that the healthy partner is also experiencing tremendous loss of love and support and still needs to feel love and support too. Similarly, it is not uncommon for people with dementia in residential care homes to be attracted to and want to pursue relationships with other people in the care home.

Sexuality is an inherent part of being human, and is experienced by every person.

If you have any questions or concerns, please reach out and speak to someone:

  • your doctor
  • family 
  • trusted friend 
  • counsellor 
  • a religious/spiritual adviser 
  • Interior Health clinician or social worker 
  • or call the First Link dementia helpline at 1-800-936-6033.


More Dementia Aware articles

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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