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Dementia Aware  

Living well with dementia

What people with dementia need to know to live well with dementia

Dementia is not a life sentence; it is just another detour in your life’s journey, and you can continue to live a full and happy life.

As the dementia changes, you will have to compensate for loss, enhance your abilities, develop talents and create a new future invested with hope and meaning. It will take a little work, a lot of patience and a willingness to accept support, but you can live a meaningful, purposeful life.

Do not allow your mind to imprison you; do not surrender to the dementia. We live our life through stories, and we all have a story, so why not consider dementia as an unfolding narrative of a new chapter of your life story.

Researchers and people with dementia both agree that it is important to continue to look after your health, your mind, your body and spirit, and to stay engaged after a diagnosis of dementia.

Living Well Care Plan:

Health

Despite receiving a diagnosis of dementia, it is still important to look after your health.

The healthier you are, the less likelihood of visits to the hospital, of developing new medical conditions, of experiencing delirium.

To keep healthy, you should:

  • Eat a healthy diet – follow the Canada Food Guide or recommendations of doctor/dietician
  • See doctor regularly
  • Take your medications. Discuss any vitamin supplements or herbal preparations with your doctor
  • If you have a pre-existing medical condition: diabetes, high blood pressure, follow your healthcare plan
  • Stay hydrated, drinking 6-8 glasses of water daily helps prevent constipation, bladder infections, decreases risk of delirium (3)

Mind

Keeping the mind and body active and eating a healthy diet helps you feel good, think more clearly and may even slow down changes in the brain.

Activities that stimulate the brain include reading, talking with others, singing, puzzles, playing cards. If you are no longer able to read, try books on tape.

Body

Physical activity not only keeps you fit, but also helps you feel less stressed and more energetic. If you do not exercise regularly or are trying a new activity, remember to talk to your doctor first.

Also, if you are unable to do an activity you previously enjoyed, such as golf, do not despair, with some creative planning, any activity can be changed to suit your strength and abilities.

For example, if you are unable to play a full round of golf, try nine holes, or mini-golf. If you are wheelchair dependent, try bocce ball or tai chi.

Staying Engaged

Continuing to participate in day-to-day activities, visiting with family/friends, socializing and doing activities you enjoy can instill feelings of confidence and self worth, of belonging and being a part of your community.

Being engaged also helps to prevent further decline, distract from sad/negative feelings, and get pleasure and meaning in life. 

Emotional Care

Many people with dementia say that they have chosen to not worry about their future, but rather strive to appreciate and enjoy what they have today (Downs & Bowers, 2008).

There will be good days and bad days, that’s life. Try to keep a positive outlook, smile, laugh, share stories, join a support group, attend church (4)

Daily Life

Maintaining a routine is a valuable strategy to reduce the complexity of every day life. Familiar plans and activities allow people with dementia to rely on their embodied skills, a kind of automatic pilot that requires less explicit effort (Nygard & Ohman, 2002).

Slow down and allow yourself time to complete a task, make lists, accept offers of help. Remember, you don’t need to ‘do it all’.

Support

Support can be from a healthcare agency, a friend, Alzheimer Society of B.C., a homecare service.

At first, you may not need any help, but over time, you may find you tire more easily, take longer to do a task or have difficulty completing a task. Accepting support is not a sign of weakness or laziness; the willingness to accept help means that you are taking control of your life.

Also, by accepting support, you will have more energy and time to do the things you enjoy Support can be accepting a ride to the store, your home cleaned, lawn mowed, or help with bathing or medications.

These small acts will help you remain independent at home and to spend more time with those you love.

Planning

Take control of your life. Make legal, healthcare and financial decisions, talk to your loved ones about your wishes. Keep a journal, a video recording, a memory book, write letters to your loved ones (1,2).

  • Make a will
  • Power of attorney
  • Representation agreement
  • Advance directives

Environment

Living at home requires a balance between minimizing risk and maximizing independence. Many people with dementia have found assistive technology to be helpful, and there are devices that provide prompts and safeguards which can help you be independent and safe in your own home.

Assistive devices include:

  • medication reminders
  • cooker monitoring, smoke and CO2 detectors
  • speaking clocks, electronic calendars, preprogram telephones
  • raised toilet seat, hand held shower, bath seat
  • Medical alert system, fall detection alert: www.medicalert.ca/safelyhome.com; www.lifeline.ca

For more information, see Dementia Aware articles:

  • Financial, legal, health care matters
  • Dementia to-do list
  • Dementia and delirium
  • Dementia and emotion


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The 3 Es of dementia

What you need to know about engaging, enabling and empowering people with dementia

The word dementia conjures up so many different thoughts: a loss of memory, a loss of independence, a loss of function.

But instead of focusing on the debilitating and despairing features, let's acknowledge and support people with dementia.

Let's engage and enable them to live as productive members of society and empower them so they can continue to live a full and happy life.

If we can promote a better understanding of dementia, dispel the myths and misconceptions, and reduce the social isolation and stigma that so may people with dementia experience, we can help them feel accepted and respected. 

We all have a role to play in recognizing people with dementia as part of our community and helping to support their independence, value and social inclusion.

We can Engage people with dementia by:

  • Hearing their voices and listening to what they have to say
  • Including them in the development of dementia focused policies and programs
  • Inviting their participation in community development plans e.g. dementia friendly community. Many communities in B.C. are dementia friendly with a focus on helping people with dementia feel included and supported in the places they live, work and play, understanding the challenges they face, working with them, and advocating for them
  • Embracing their wisdom, humour and life stories
  • Encouraging them to volunteer, mentor, talk to students, offer peer support to others with dementia. It is through action and giving back to the community and by helping others, that people with dementia find their life to have meaning and purpose
  • Valuing our relationship with people with dementia and recognizing our shared humanity. We all have so much we can learn from one another (mutuality)

Support from others may enable the person with dementia to keep doing the things that are important to them. Support can come from community healthcare agencies, private care, non-profit agencies, Alzheimer Society of B.C., family physician, caregiver, family, friends, neighbours, and volunteers

We can Enable people with dementia by:

  • Helping them to keep their minds active: sharing life stories, singing, computer games, art. Studies have shown that any activity that engages and stimulates the brain is likely to be beneficial.
  • Encouraging them to exercise and live a healthy lifestyle
  • Taking them for lunch, to a concert, picnic in the park, visiting with them at home. Research shows that social engagement and physical activity can improve the quality of life in people with dementia, reduce changes in behaviour and may even delay cognitive decline.
  • Offering support: help with groceries, go for coffee, accompany to Minds in Motion, walk the dog
  • Recognizing what they can do and supporting them in achieving goals
  • Helping them to get appropriate support and to navigate the healthcare system
  • Participating in fundraising activities e.g. Walk for Memories
  • Educating ourselves about dementia and advocating for improved supports/services
  • Promoting public awareness and understanding about dementia

Encouraging people with dementia to stay engaged and continue to participate in activities they enjoy can be very empowering and help them to live a full and happy life.

We can Empower people with dementia by:

  • Being respectful: society places too great an emphasis on reality and memory, thus excluding people with dementia from the sphere of human dignity and respect (Post, 1995)
  • Being patient: do not talk or make decisions for them, let them decide to decide, do not talk loudly or very slowly, be genuine, be conscious of body language, facial expressions and gestures. People with dementia can still sense when someone is being disrespectful and treating them unkindly
  • Being supportive: offer gentle reassurance or help, do not assume the person cannot do something. With a little bit of support, patience and encouragement, most people with dementia can accomplish most or part of a task.  
  • Being Kind: look at the person, smile, say hello, do not use derogatory or impolite words or call names
  • Being forgiving: sometimes a person with dementia may display odd behaviour or gestures, may repeat same story over and over, may forget someone’s name or say something rude or unkind. Do not challenge, correct or reprimand the person; let it go
  • Being mindful: acknowledge the person’s culture, values, faith, lived experiences. Treat the person with dementia as you expect others to treat you

Benefits of the 3 Es for people with dementia include:

  • Being treated as an equal
  • Being accepted, valued and respected (personhood)
  • Being a part of their community (social inclusion)
  • A sense of purpose and accomplishment
  • Acknowledgement of skills and experiences
  • Being able to address issues related to dementia and influence positive change
  • An increase in self esteem, self worth and confidence
  • Being able to share the perspective of the ‘person living with dementia

It is important to remember that dementia is not the total character of the person, there is so much more; a person who was once a child, a young adult, a working person, a family person who contributed to society, who influenced, guided and shaped the lives of those around him/her.

That person, the inner being is still there and will always be right until he/she takes a final breath.



Dementia and behaviour

What you need to know about the management of behaviours in the person with dementia

Behaviour is a complex phenomenon affected by interaction of cognitive impairment, physical health, mental health, past habits, personality and environmental factors.

The regression of dementia is more than just the loss of brain cells.

For people with dementia, the impairment in cognition, difficulties in social settings and in day-to-day, self-care activities, can make them increasingly isolated and detached from the world, and they start to feel a loss of social connectedness and belonging.

With loss of identity, of independence and control, comes a loss of personal security and with increasing insecurity comes a sense of powerlessness and behaviours such as jealousy, paranoia, shadowing, agitation may occur.

Most people with dementia will also exhibit a loss of ability to control impulses and to manage stress and may ‘act out’ with childlike frustration.

As the dementia continues to regress and the person requires more assistance with ADLs (bathing, toileting) feelings of embarrassment, shame, and anxiety may show as aggressive behaviour.

It can be very upsetting and stressful for the caregiver (family) to see their loved one behaving in a strange or atypical way. Many caregivers report feelings of shame and embarrassment, frustration, helplessness, emotional pain and great anguish as they try to help the person with dementia.

When a person with dementia exhibits a behaviour, it is important to try to remember that:

  • The behaviour is not planned or deliberate
  • The behaviour is an expression of an unmet need
  • There is always a reason for the behaviour — people with Lewy Body dementia usually experience hallucinations/delusions, whilst people with frontotemporal dementia typically experience disinhibited behaviours

The main reasons for behaviour include:

  • Pain, discomfort or feeling unwell
  • Loneliness and lack of social contact
  • Boredom and/or inactivity
  • Sensory deprivation
  • Depression
  • Fear
  • Response to delusions/hallucinations
  • Environmental regression: a sudden change in daily routine (house re-modelling, favourite chair moved), which creates great stress and anxiety
  • Sundowning: people with dementia may become more confused, restless, upset, suspicious late in the afternoon/early evening. Whilst no one is sure what causes sundowning, it seems to result from changes that are occurring in the brain and may relate to sleep disruption or lack of sensory stimulation after dark.

For the person with dementia, the inability to express clearly what is happening is both terrifying and confusing, therefore, it is important to try to understand why the person with dementia is behaving this way.

If you can determine what may be triggering the behaviour — personal care, soiled clothing — it may be easier to figure out ways to manage the behaviour. Any behaviour changes and the impact on caregiver/family should always be discussed with your doctor.

For the more challenging behaviours, medications may be prescribed, however, these medications do have side effects with negative consequences e.g. increased drowsiness, increased falls risk, and their long-term use is generally not encouraged.

Before you reach for medications, ask yourself whether the person with dementia is:

  • Tired
  • Hungry or thirsty
  • In pain or appears uncomfortable (constipated)
  • Frustrated or looking for something e.g. glasses, hearing aide
  • Reacting to a change in the environment e.g. noise, unfamiliar place
  • Trying to tell you something
  • Needs to go to the washroom or is incontinent
  • Upset
  • Bored
  • Having a reaction to medication, or if diabetic, blood sugar low/high
  • Experiencing delirium

Interventions that might help:

  • Take a deep breath and remain calm
  • Do not shout, grab at, argue with, or correct person with dementia
  • Position self below person’s eye level (avoid staring at or looking down on person)
  • Turn up lights
  • Reduce stimulation: turn off TV, radio
  • Offer food, fluids
  • Ensure person with dementia has glasses, mobility aide, hearing aide
  • Assist with toilet/personal care (if able too)
  • Try aromatherapy e.g. lavender oil
  • Massage shoulders, light strokes to face/hands, place your hand under person’s hand (helps give person with dementia a sense of control, is less threatening, and promotes sense of trust)
  • Distract person: look at photographs, play a game, make a cup of tea
  • Go for a walk or sit in garden
  • Offer reassurance and validate feelings. Validation is not lying, consider it avoiding or challenging person with dementia’s reality, do not correct his/her beliefs, but instead, just be with them in the moment

Managing changed behaviours can be very difficult, and is often a matter of trial and error. Some days, it may feel as if everything the caregiver does to help the person is ineffective.

If the person is safe, the best thing to do is to leave him/her alone; take a deep breath and go for a short walk, call a friend, neighbour, family, your doctor, or the First Link dementia helpline at 1-800-936-6033 for support and help.

If behaviours become worse and the person becomes unmanageable, or appears at risk of harming self or others; call 911 immediately.





The language of dementia

What you need to know about communicating with a person with dementia

Communication is an inherent mutual activity and we cannot be truly in relationship with others if we are not communicating with them.

When communicating with people with dementia, caregivers need the flexibility to be able to communicate on several different levels. Many caregivers report feelings of frustration, inadequacy in understanding and responding to the person with dementia’s attempts to communicate.

Many problem behaviours exhibited by people with dementia can be attempts to communicate — feeling hungry, want to go to the toilet. Grabbing, moaning, pointing, is often incorrectly interpreted as the dementia rather than the failed attempt to communicate.

Facilitating communication for every-day purposes requires a great deal of sensitivity and patience and a determination not to give up on someone whose speech may be slow or difficult to comprehend.

Communication Strategies:

  • Ensure person can see you (glasses on)
  • Ensure person can hear you, wears hearing aid; try to reduce background noises — radio
  • Sit close to person, reassure by physical contact — touch arm or shoulder
  • Speak in a gentle, caring manner
  • Keep it simple, ask one question at a time
  • Try not to interrupt the flow of conversation by asking questions requiring a response
  • Allow time
  • Limit choices: people with dementia are often confused by direct, open-ended questions such as “what would you like for lunch?” Or by rapid fire presentation of several choices, “would you like soup, salad or a sandwich?” 
  • Point to, or show the item you are talking about 
  • Ask the person with dementia to point or show you
  • Be conscious of your clothing. As we age, the lens of the eyes start yellowing, and for many people with dementia, it can cause colour agnosia. This, along with impaired perception, causes them to misinterpret sharp colour contrast and patterns especially busy patterns, which can cause dizziness and may even appear to move.

Common problems:

Perseveration

  • Repeats phrases, questions or key words over and over
  • Person may be worried about something and need reassurance or want something to change. For example, when’s Joan coming? The message may be as simple as I’m lonely and I want to see my wife.

Paraphasia

  • Speech is inconsequential, vague, and go around in circles
  • Try to go with the flow
  • Pick up on any phrases at which the person seems to become excited/animated and respond to these.

Nominal dysphasia

  • May call you by the name of someone else
  • The person with dementia may think you are someone else because your mannerism or appearance reminds them of someone.

Echolalia

  • Repeats your own words back to you when you ask a question
  • This could be a request for clarification, or for you to slow down a little
  • Or, it may be just a game. If the person with dementia seems to enjoy this kind of interaction, then go along with it

Confabulation

  • Covers up memory problems by turning questions back to person or gives inaccurate information
  • The person may enjoy story telling, or may feel need to make self more interesting. 
  • If information is required for official purposes, then accuracy of information should be verified with another person.

Aphasia 

  • Rarely or never speaks
  • Ensure you are waiting long enough for a response
  • Watch for non-verbal indicators of what the person may be feeling or trying to tell you

Dysphasia

  • Difficulty selecting the right words and becomes easily anxious/frustrated
  • Try to respond to the sense of what the person is saying and give positive, non-verbal signals
  • Ask person to show you
  • Offer cues, rather than being tempted to speak for the person.

Each person with dementia is different, therefore, some of the following suggestions will work for some, but not for others: 

  • Don’t argue or confront the person with dementia. You will never win the argument. Instead, you will end up feeling stressed and frustrated and the person with dementia may become upset and angry
  • Don’t tell the person what they can’t do. Reframe in a positive light by emphasizing what they can do
  • If the person is struggling with a task or appears lost, do not say, “what are you doing?” instead ask, “can I help you?”
  • Don’t be critical, condescending, or judgmental. Even if the words don’t make sense, the tone of voice and facial expressions can be picked up by the person, and people with dementia seem to have a heightened awareness of body language
  • Don’t talk in front of the person as if he/she is not present. The person with dementia does not have to be able to participate in a discussion actively to enjoy it and benefit from it
  • Don’t remind the person that something was forgotten or repeated
  • Use “therapeutic fibbing.” People with dementia struggle with logic, rational thought, sequencing and emotional content. When telling the truth would cause pain, anxiety or increased confusion or the person is experiencing life in a different time era, it is kinder and more respectful to redirect and distract person and to be present with them in their world 
  • The arts: painting, music, dance, colouring books, provide people with dementia who are unable to communicate verbally an outlet to express their thoughts
  • When all else fails, take a deep breath, keep trying, and try to find humour in the situation and laugh with the person with dementia.


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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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