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Dementia Aware  

Rethinking dementia

What you need to know about rementia

Dementia literally means without mind and is derived from the Latin word demens.

Unfortunately, the word dementia or demented has become synonymous with words such as crazy, insane, unhinged, disturbed, mad. This has resulted in people with dementia being labelled and stigmatized.

For decades, dementia was considered a progressive and irreversible disease and a prognosis of misery for the sufferer and family; a living death (Innes, 2002). It was thought to be a disease of old age and once a person was diagnosed, there was nothing that could be done.

Changes in behaviours were considered a normal part of the dementia process and the only way people with dementia could be managed was to medicate them and send them to live in nursing homes until they died.

In the 1980s, social psychologists began to argue for the importance of supporting the carers of people with dementia to enable them to provide care. This was then followed by a call to support the person who had been diagnosed with dementia (Kitwood, 1997).  

Kitwood called for an understanding of dementia that recognised the individuality and uniqueness of each person, regardless of their cognitive ability, and placed communication and social interaction as central components of person centred care.

He called this philosophy of care rementia:

  • Treating the person as an individual
  • Valuing the person and family
  • Taking the perspective of the person when planning and providing care
  • Ensuring that a positive social environment exists in which the person can experience relative well being (Brooker, 2007).

Rementia

Kitwood believed that people with dementia could regain some of their lost cognitive and functional abilities through rementia. Rementia places emphasis on enabling people with dementia to communicate, to express their feelings and wishes and to maintain and develop relationships (Allan and Killick, 2008).  

Dr Daniel Nightingale, clinical dementia/rementia specialist, states that in rementia, independence and free will of the person with dementia is honoured.

Rementia enables us to give back the skills and abilities that the person has lost or had taken away due to being labelled as having dementia. In a nutshell, dementia says the person with dementia cannot; rementia says the person with dementia can.

In dementia, we see the person first, a person with a life history, a family, a member of the community, a person with lived experiences, a work history, a childhood.

If we embrace that person and help to reduce the fear and anxiety he/she may feel then we will increase confidence, self esteem, and empower the person to take back control of his/her life. 

Putting rementia into practise

Rementia is achieved by shaping the attitudes and engagement of those supporting people with dementia who live in their own home, in supportive/assisted living environment and in nursing homes.

Nightingale (2017) believes the behavioural and psychological symptoms we often see in people with dementia are not necessarily due to the dementia process, but due to the attitudes and interaction of others e.g. the things we do as a society that restrict and diminish the person with dementia.

When communication/interaction is negative and undermines personhood, it can cause catastrophic damage to the well-being of people with dementia.

Negative interactions include:

  • Disempowerment – not allowing person to use his/her abilities, failing to help person complete actions he/she has initiated
  • Infantilization – treating person very patronizingly (like a very young child)
  • Disparagement – telling person he/she is incompetent, useless
  • Mockery – teasing, humiliating, making fun of person
  • Intimidation – inducing fear in person through use of threats/physical power
  • Banishment – sending person away/excluding from activity

Communication and Interaction

Kitwood and Nightingale believe that when excess disability is removed by changing from a toxic social environment to one that supports abilities remaining in people with dementia and/or finding a way to help the person overcome their disabilities by using their existing strengths and abilities.

Rementia is achieved through a variety of positive interactions:

  • Recognition – of the person as a unique individual
  • Collaboration – between the person and caregiver over caring tasks
  • Validation – acknowledging and responding to the person’s emptions
  • Facilitation – enabling the person to act or express
  • Relaxation – in he company of others
  • Celebration – the sharing of joy
  • Play – activities enjoyed for their own sake
  • Timalation – gentle interaction involving the senses e.g. aromatherapy, touch
  • Negotiation_ allowing choice and control for the person
  • Holding – providing a safe psychological space for expressing strong emotions

Therapeutic activities

In the past, the sole purpose of therapeutic activity was to decrease disturbed behaviour, agitation and exit seeking. In rementia, the main purpose of all activities is to support well-being, dignity, and self worth of people with dementia in the face of high levels of cognitive loss.

For example, creative and artistic activities and reminiscence work place emphasis on enabling people with dementia to communicate, to express their feelings and wishes and to maintain and develop relationships (Allan and Killick, 2008).

People with dementia want to feel valued, they want to feel they are part of the community, and a respected member of society.

The good news is that here in the Okanagan, many residential care sites have moved away from traditional dementia activities and routines and now follow care models that embrace the rementia philosophy: personalized engagement based on the person’s abilities and preferences.

This is my final article on Dementia Aware: what you need to know. I hope you have found the information educational, supportive and helpful.

Thank you for your kind words of support and emails, and a big thank you to Ross at Castanet for giving me the opportunity to write a column about dementia.

I wish you all a safe, happy and healthy New Year! 

Tracey





Is MCI a type of dementia?

What you need to know about a diagnosis of mild cognitive impairment (MCI)

Some people experience mild changes in memory and thinking abilities that are noticeable to the person affected, and to family and friends, but do not affect the individual’s ability to carry out every-day activities.

It is a neuro-cognitive disorder, but not severe enough to warrant a diagnosis of dementia. It is called mild cognitive impairment (MCI) and affects approximately 15-20 per cent of people 65 or older.

The term mild is used in comparison to the more severe functional impairments of dementia. The difficulties experienced by a person with MCI varies, however most people show cognitive decline greater than expected for their age and education level.

People with MCI  may have difficulties with:

  • Memory
  • Language
  • Attention
  • Processing visual/spatial information
  • Complex thinking

Diagnosis

Diagnosing mild cognitive impairment (MCI) requires a careful and comprehensive medical and cognitive assessment including family and medical history, medication review, and blood tests, to rule out other causes of cognitive impairment e.g. depression, familial Alzheimer’s Disease, nutritional deficiency, endocrine problem.

The following criteria* is used by doctors to determine if a person has MCI:

  • Memory complaint, preferably supported by another person
  • Memory impairment detected with standard tests of cognitive function
  • Intact activities of daily living
  • Decline in one or more cognitive skills
  • Failure to satisfy criteria for dementia

There are two types of MCI:

Amnestic

  • Memory impairment
  • Most common form of MCI
  • May progress to Alzheimer’s disease

Non-amnestic

  • Memory usually not impaired
  • Other cognitive skills such attention, language, or problem solving is most impaired
  • May progress to Lewy body dementia or temporal frontal love dementia

Treatment

While there is no specific treatment for MCI, research indicates that following a healthy lifestyle and keeping the brain active is associated with a lower risk of cognitive decline.

A person with MCI will be regularly monitored and assessed for any changes in cognitive abilities. Counselling will also help support the person with MCI and caregiver to adjust to the diagnosis and plan for the future. Lifestyle strategies that are likely beneficial to people with MCI include:

  • Brain training: participating in mentally stimulating activities is associated with lower risk of cognitive decline which may help people with MCI
  • Physical exercise: studies indicate cognitive decline is reduced in people with MCI who walk daily
  • Healthy diet: following the Mediterranean diet has been associated with a lower risk of progression from MCI to dementia
  • Social activity: continue to work, volunteer, participate in meaningful activities, meet with friends
  • Management of any pre-existing medical conditions e.g.  diabetes, high blood pressure, high cholesterol which can contribute to cognitive decline
  • Stop smoking and/or controlled substance use
  • Reduce alcohol intake
  • Manage weight: obesity also increases risk of cognitive decline

Studies have shown that people with MCI are more prone to depression, anxiety, increased stress and sleep disorders. This is thought to be related to the uncertainty of whether or not the MCI will resolve or become dementia (Lautenschlager and Kurz, 2010).

Will I get dementia?

Mild cognitive impairment (MCI) is often thought of as a transitional state between normal aging and early dementia, and research does indicate that people with MCI are more likely to develop dementia, especially Alzheimer’s disease.

However, MCI can develop for many reasons and does not always lead to dementia e.g. medication, thyroid deficiency. Therefore, it is important that anyone experiencing memory problems see his/her doctor for an assessment and possible treatment.

The conversion rate from MCI to dementia is around 10-15 per cent per year. For example, if 100 people are diagnosed with MCI this year, 10-15 of them will have dementia next year.

In 10 years, 65-81 of them will have dementia. But this also means that most of them will not have dementia next year; and even in 10 years between 19 and 35 of them will not have dementia (Hughes, 2011).

Some people with MCI, primarily those without memory problems, experience an improvement in cognition or revert to normal cognitive status.

It is unclear why some people with MCI develop dementia and others do not. Therefore, identifying which individuals with mild cognitive impairment are more likely to develop Alzheimer’s disease and other dementias is a major goal of current research.

*Ward A., Tardiff S., Dye C., & Arrighi HM. (2013). Rate of conversion from prodromal Alzheimer’s disease to Alzheimer’s dementia: a systematic review of the literature. Dementia Geriatric Cognitive Disorder Extra 2013; 3: 320-332. 13



Dementia and the holidays

What you need to know about celebrating the holidays with a person with dementia

With the holiday season approaching quickly — Hanukah, Christmas — people’s lives become busier and more stressful as they bake, shop, decorate and plan for the festivities.

For people with dementia and their caregivers, the holiday season can be a mixture of joy and sadness, and it is not unusual to feel a special sense of loss and disconnection at this time.

In the early stage of dementia, there will likely be just a minor change, but as the dementia progresses, it is a good idea to rethink previous holiday traditions.

Keep things simple, less is more — fewer visitors, fewer holiday events, fewer lights, fewer decorations are key for the person with dementia and caregiver to enjoy the holiday season.

Remember, the noisier and busier the environment, the more overstimulated the person with dementia will become and this can result in behaviour changes such as anger, pacing, agitation.

The person with dementia can still participate and contribute to the holiday season by helping with some simple tasks:

  • String garlands of popcorn and cranberries, cereal e.g. fruit loops, cheerios. Repetition that seems tedious to others is often a source of great comfort and can be soothing to a person with dementia
  • Wrap gifts
  • Stamp and seal envelopes
  • Crack nuts
  • Pack homemade cookies and baking goods in tins
  • Stir cake batter, icing

Tips for the Caregiver

Before the holidays:

  • Talk with family, share tasks, cooking, etc.
  • Consider on-line gift shopping, so person with dementia can participate
  • Utilize in-home respite from community care, private agency, or family/friends for caregiver to have a break and/or attend important family events that may be too stressful for person with dementia e.g. carol singing, holiday play
  • Continue with daily routine as much as possible

Create a soothing holiday atmosphere:

  • Consider eating the holiday meal earlier in the day
  • Limit number of visitors to home. Too many guests, especially if the person with dementia does not recognize them can be frustrating and tiring
  • Play holiday music or use a personalized MP3 Player with headphones
  • Watch holiday and/or old movies, religious/spiritual shows
  • Have favourite foods/beverages available: enlist friends/family to bake, try store-bought or buy at holiday craft sales
  • Colouring books
  • Do a large piece puzzle together (great to do with younger family members)
  • Share holiday stories and memories
  • Ensure person with dementia has quiet time

Try to avoid:

  • Blinking lights
  • Caution with extension cords — tripping hazard
  • Figurines/toys that play music or sing
  • Limit use of potpourri, scented candles — sensory overload
  • Avoid fake fruit and candies as person with dementia may mistake them for food
  • Limit use of alcohol/ sugary beverages. Too much alcohol and sugar can trigger behavioral and mood changes, may interact with medications and increase potential risk of falling

Travelling

Travelling with a person with dementia can be challenging especially if the person is in the middle or advanced stage of dementia.

Any change in routine can trigger distress, increased confusion, and agitation, as the person tries to make sense of the unfamiliar environment. Remember, a person with dementia will have difficulty adjusting to time changes.

People with dementia do best in a calm, familiar, more structured environment; however, with careful planning and organization, travel can be successful. Before undertaking any travel plans, it is advisable to talk with your doctor first.

When planning a trip, travel early in the day and on a less busy day, try to avoid travel at sundown and nighttime.

Postpone trip if either of you are unwell. Keep important documents on hand and pack a bag with incontinent products, change of clothes, medications, snacks/fluids. Administer any calming medications as prescribed by doctor.

Ensure person with dementia wears an identification bracelet/necklace. Upon arrival at destination, assist person to the washroom, give fluids, settle the person in a quiet, calm area to rest.

Travel by car:

  • Check car is safe to drive: check oil, tires
  • Do not allow the person with dementia to drive
  • Ensure person is sitting comfortably and wearing seatbelt
  • Engage safety/childproof locks on doors
  • For long trip, plan for breaks: bathroom, short walk
  • Use washroom before trip. If incontinent, ensure protective underwear worn
  • Do not leave person unattended. If you must leave car, lock all doors and take car keys
  • Park in a safe area so person cannot exit car close to traffic

Travel by air:

  • Advise airline you are travelling with a person with dementia
  • Purchase cancellation insurance
  • Request assistance to board/leave airplane, sit together, select seats in first three rows, preferably middle and aisle seat, close to bathroom
  • Take MP3 player/headphones, a small puzzle, coloring book, deck of cards to distract person

Do not travel if person with dementia:

  • frequently wanders or wants to leave home constantly
  • Is usually up all night and/or experiences sundowning behaviour
  • Is aggressive or agitated
  • Is delusional, paranoid, hallucinates and/or displays anti-social behaviour
  • Becomes restless, anxious, emotional in noisy, busy environments
  • Is already experiencing disorientation and restless pacing behavior at home
  • May place the caregiver or others at risk of harm e.g. attempt to drive car

Nursing Home

  • Join person with dementia for holiday meal
  • Talks with staff re: feasibility of person coming home for a holiday meal (see suggestions above)
  • If person with dementia asks to return to nursing home, do not be offended, consider it a positive sign that the person now considers the nursing home his/her home

*Join me on Sunday, Dec. 10, at 13:30 PST where I will be discussing Dementia and the Holidays on Caregivers with Hope.



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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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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].



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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