techniques – Page 2 – My Alzheimer's Story

“I feel the responsibility is more on the families than the long-term care system. Too many families abandon their loved ones to the system,” commented Ethelle Lord in response to my post “Elder abuse in long term care facilities needs to be researched now if not sooner.”

I respect Lord’s opinion. However, I also respectfully disagree. It’s easy to point the finger and blame adult children and other family members for “dumping” aging parents and family members in long-term care facilities and leaving them there to languish alone. Because of the stigma and myths associated with the disease, it’s even easier to lay blame when the people in question live with dementia. It’s true that countless long-term care residents go for months, sometimes years, sometimes forever without visitors, and not a soul to advocate on their behalf. But are families the ones at fault? And is it useful to point fingers?

Here are some of the reasons older people are “abandoned:”

many families place aging parents in long-term care facilities after having cared for them to the point of exhaustion; placement is a bid to save their own lives. Here’s one example: “I have kept my mother in law at home with me and my family for 17 yrs. She is basically bed bound now and requires 24/7 assistance with all daily needs. For the last 3 yrs I have literally stayed in the house with her. I am tired, worn out, and frustrated because no one will give me any relief.”
many families are forced to place loved ones in long-term care because they are financially, physically and/or emotionally unable to care for them even though they may want to. Some don’t have the skills, some live too far away, others are “sandwiched.” The decision to place their loved one in care is devastatingly difficult to make; it rips their hearts out, but they feel they have no choice.
some families do not wish to care for aging parents, nor do they feel it’s their responsibility to do to so. And who are we to judge whether that’s right or wrong? Who says children are ultimately responsible for their parents’ quality of life? Parents choose to have children, but if their children as adults choose not to be involved with them later in life, neither society nor government has the right to judge or govern that choice, any more than we can tell people whether or not to have children.
some parents do not wish their families to care for them, they don’t wish to “be a burden;” and they prefer to be placed in long-term care. I have informally asked scores of people whether they would want their children to care for them as they age. Many say definitely not, particularly care partners in online dementia care groups who say they would not want their children to care from them as they have cared for their parents.
some families are estranged; they don’t want to be in contact. They just don’t like each other, plain and simple.
some elderly people do not have children or extended family, and they end up alone as a result.
some adult children who wish to care for their aging parents are precluded from doing so by other family members, agencies or guardians who have legal control. Sometimes their loved ones are moved without their knowledge, or access is restricted or denied in some way.
some family members are forced by social services or other agencies to place loved ones in care even though it is against their loved one’s wishes as well as their own.
some family members are unable to visit their aging parent after placing them in care because they are overwhelmed by guilt, can’t bear to see their loved one suffer, or think it doesn’t matter because their loved one doesn’t recognize them anymore, etc.
some families implicitly trust long-term care providers and believe their loved one is better off in an institution; they see no need to visit, supervise, or advocate.
some long-term care facilities prevent family members from seeing their loved ones, particularly if the family members criticize care practices, demand change or aggressively advocate for better care. Jenny Moore, the founder of YourVoiceMatters.org.uk, for example, was banned from seeing her mother-in-law for three years after being “a habitual and vexatious complainant” because she voiced concerns about her mother-in-law’s care. Her case, while extreme, is not unique. In this way, some long-term care facilities hold their residents “hostage” with family members powerless to help them.
And sadly, some family members place aging parents in facilities for selfish reasons such as wanting to preserve their inheritance. To these people, having their parent’s money after they die is more important than providing them the possible best care while they’re alive.

I was fortunate to be in a position to be able to care in various ways for my mother who lived with dementia. While I chose to do so, I don’t believe adult children are obligated to care for aging parents unless they have a legal responsibility to do so in which case they should fulfill that responsibility or cede it to someone else who will. I believe the overall responsibility for eldercare rests with society in general, the healthcare system in particular (doctors, nurses, healthcare workers, social workers, relevant professional organizations, etc.), government (law makers, law enforcers, regulators, ombudsmen, etc.), long-term care providers (including management and care workers at all levels), and family members who wish to be actively involved.

Regardless of how we collectively decide to handle eldercare moving forward, I believe it’s imperative that we treat our elders with more respect and humanity than we do now.

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2016/03/30/20-ways-to-create-dementia-care-homes-away-from-home/

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Advocacy, NHBPS, Toward better care

25 practices long-term care workers know are elder neglect and abuse; it’s time to put a stop to it

October 4, 2016June 24, 2018 My Alzheimer's Story

In Elder Abuse: Global Situation, Risk Factors, and Prevention Strategies, a literature review published in The Gerontologist (Gerontologist, 2016, Vol. 56. No. S2, S194—S2015), elder abuse is said to be “recognized internationally as an extensive and serious problem, urgently requiring the attention of healthcare systems, social welfare agencies, policy makers and the general public.”

Nevertheless, the authors write that they are unable to cover the prevalence of elder abuse in institutional settings “because of the lack of research in this area; no reliable prevalence studies have been conducted of such mistreatment in nursing homes or other long-term care facilities.” Lack of research does not mean that elder abuse does not occur in such institutions. In fact, based on my personal experience and observations as well and the anecdotal evidence of countless others around the world, my sense is that many elders in care, particularly those who live with dementia, are subject to neglect and abuse on a daily basis. I’ve talked about this issue before here: 7 forms of elder abuse and how to spot the signs to stop it; and here: 20 shocking facts about the abuse of elders with dementia.

I believe that neglect and abuse, again particularly with respect to elders who live with dementia, have become normalized in the “care” cultures of many long-term care facilities in North America, the United Kingdom, and elsewhere. This despite the fact that care workers seem able to identify the kinds of practices that constitute neglect and abuse. Here are some named by care workers themselves in focus groups conducted in 2001:

being aggressive with a resident
handling a resident roughly
pulling too hard on a resident
threatening a resident
pushing, grabbing, shoving or pinching a resident
punching, slapping, hitting, or kicking a resident
speaking in a harsh tone to a resident
saying mean things to a resident
yelling at a resident in anger
insulting or swearing at a resident
using excessive physical restraints
throwing something at a resident
not providing oral/dental care
not doing range of motion exercises
not changing residents each time they are wet or soiled after an episode of incontinence
ignoring residents who are bedbound
not offering activities to residents
not doing prescribed wound care
not giving residents regular baths
doing a one-person transfer when the resident requires a two-person transfer
not providing cuing or task segmentation to residents who need that kind of assistance to maximize their independence
skipping scheduled toileting
not helping residents when they ask
not keeping residents hydrated
turning off a call light and taking no action on the resident’s request

Noteworthy by its absence is the inappropriate use of antipsychotic drugs that act as chemical restraints. I have described what some of these practices might look and feel like in real life from the point of view of “Alzheimer’s Annie,” a fictionalized 85-year-old woman who lives with the later stages of dementia, in a series of vignettes based on the Nursing Home Behaviour Problem Scale. Unfortunately, behavioural expressions that result from people with dementia being misunderstood at best, and neglected and abused at worst, are more often than not blamed on them rather than on the real causes for what is viewed by medical professionals as problematic behaviour.

It’s time to take a closer look at this tragic and completely unacceptable state of affairs, demand research into the nature and prevalence of neglect and abuse in long-term care, and most important, to immediately implement steps stop it.

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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Advocacy, Family, Toward better care

20 shocking facts about the abuse of elders with dementia

September 8, 2016October 27, 2018 My Alzheimer's Story

The World Health Organization is clear on what constitutes elder abuse: “single or repeated acts, or lack of appropriate action, occurring within a relationship where there is an expectation of trust, which causes harm or distress to an older person.” Experts classify elder abuse in six or seven different categories: financial, physical, sexual, emotional, neglect, systemic, and neglect. More about the types of abuse here.

I’ve taken most of the twenty shocking facts below from a June 2016 BrainXchange webinar “When Dementia and Abuse Issues Collide: Untangling a Wicked Combination,” featuring Dr. Samir K. Sinha, Director of Geriatrics, Sinai Health System and the University Health Network Hospitals in Ontario, Canada. A video of the one-hour webinar appears at the bottom of the post.

20 shocking facts about the abuse of elderly people who live with dementia

Family members are often the abusers
Research indicates that close to half of people with dementia being cared for by a family member at home experience some form of mistreatment.
Lack of support, education and awareness of family caregivers and institutional care workers contributes to the abuse of persons in their care
We tend to tolerate elder abuse because of our ageist and sexist societal values
Elders who are being abused, particularly those who live with dementia, may not know it
Influencing a person who lives with dementia to change their will and/or witholding care they need and can afford are forms of financial abuse
Elders who are being abused may be afraid to talk about it for fear of the repercussions they believe they will suffer if they do
People with dementia who suffer abuse may not be able to articulate what is going on, may respond with challenging behaviours, and then be medicated and or sedated to manage the responsive behaviour
Abusers (both family members and institutions) may restrict access to the person being abused in order to hide the abuse
Refusing to let family members and/or advocates see elders who live with dementia and to identify potentially abusive situations is in itself a form of abuse
Unintentional abuse is still abuse
Institutional practices and policies legitimize some forms of abuse (e.g. chemical and physical restraints)
Elder abuse is more complicated than child abuse, and therefore more difficult to address
Elder abuse is more common than many people believe
Only an estimated one in 20 cases of elder abuse is thought to be reported
In one Canadian study, only 47% of nurses in community care who witnessed abuse said they tried to stop it, which would tend to suggest that 53% who witnessed abuse DID NOT try to stop it.
Professionals are often reluctant to ask about abuse, perhaps because of a fear that discussing and acknowledging it would necessitate referral of an adult for protection and trigger a punitive response
In a 2008 study, 50% of family caregivers admitted to abusing the elders they cared for in some way, most often verbally.
A 2007 systemic review of the prevalence of elder abuse found that 17% of professional carers reported they had committed abusive acts, and over 80% reported having observed abusive behaviour by others
If we don’t recognize and address elder abuse, it’s likely to increase

Here’s the webinar in full:

https://myalzheimersstory.com/2016/06/15/7-forms-of-elder-abuse-and-how-to-spot-the-signs-to-stop-it/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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Care Partnering, Challenges & Solutions, Tips, tools & skills

6 reasons care partners fight with their loved ones

July 19, 2016April 22, 2018 My Alzheimer's Story

“I wonder why we feel such a strong need to make them see reality?” Jenny mused during our coaching session. “I used to tell myself every morning: ‘today I will NOT argue with Dad or try to make him see reality, and yet every day I’d eventually crack.’”

Jenny had just finished reading “never, never argue is the ‘N’ in BANGS,” and was doing some self-examination. We were exploring ways she might behave differently to reduce the stress she was experiencing as a care partner to her mother.

“Like your post said, who the hell cares if his hair was brown or black!!? Yet I waged such an internal battle with myself. ‘Don’t argue!’ I would say to myself and twenty minutes later I would lose my patience and try to get him to see reality – not HIS reality, MY reality!”

Jenny had lost her father to dementia and was caring for her Mom, who also had the disease.

“Now that Dad is gone,” she said. “I’m pretty good with Mom. I don’t want to repeat the mistakes I made with Dad. But I still ‘crack’ and insist she’s mistaken from time to time, even though I know it doesn’t work.”

Jenny’s words caused me to do some reflection of my own after our Skype call. Sometimes it seems we can’t help arguing, even when we know it’s ineffective and can escalate situations that we could easily defuse if we had our wits about us. When things get “pear shaped,” we sometimes blow up and then feel guilty afterward about losing control.

Here are some of the factors that may be at play when normally calm care partners lose their cool and forget the “never never argue” dementia golden rule:

1) ego

Ego is how we see ourselves. It’s the part of us that knows we are important and able, that we matter, that we count. Ego wants us to be right, maybe even more so when we know the other person is clearly and unequivocally wrong! Letting go of our own ego to bolster someone else’s isn’t easy, but it can work wonders in helping a loved one who lives with dementia reaffirm their own selfhood.

2) exhaustion

Being a caregiver, particularly to someone who lives with dementia, is often physically, emotionally and psychologically draining. Many care partners lack proper support, have little respite and become so worn out they are unable to function properly at even a basic level. It’s virtually impossible to behave rationally when one’s energetic reserves are completely drained. Put the oxygen on yourself first; get some rest.

3) frustration

Never-ending and seemingly insurmountable challenges of all shapes and sizes, unfixable situations, insoluble problems, constant repetition, being on the receiving end of abuse from various quarters – all of these result in levels of frustration that are hard to imagine unless you’ve lived them. Sometimes that frustration gets the best of us and we snap.

4) getting stuck in unproductive patterns

We all know the cliché “it’s hard to teach an old dog new tricks.” Although an increasing number of young people are being drafted into caregiving roles, a far greater number of us are longer in the tooth and have likely engaged with our care partners in certain ways for a lifetime. We’ve got “baggage.” It’s hard to break old patterns, and to employ new tricks that deliver better results.

5) lack of knowledge

Alzheimer’s and other dementias are relatively new diseases. Until recently, behavioural expressions such as aggression were believed to be caused exclusively by the disease. Now we know behavioural expressions are more often than not responses to environmental factors and the way we interact with people who live with dementia. With that understanding, we have begun to develop new tools and techniques that enable us to engage more effectively with people who live with dementia. But not everyone is aware of those techniques, and you can’t use tools you don’t know about.

6) lack of practice

Once we’ve been introduced to more effective behavioural tools, techniques and skills, it takes time to master them. Practice makes perfect as they say. But it’s hard to practice when we’re exhausted, frustrated, stuck in old patterns and not able to let go of our ego!

The next time you find yourself arguing with someone who lives with dementia, it may be helpful to take a step back and ask yourself what’s going on. Identifying what lies behind your behaviour is a first step toward changing it and creating a calmer and more peaceful environment for everyone. Awareness may also help you to stop feeling guilty and/or beating yourself up for falling into the arguing trap. We’re only human; we need to give ourselves a break!

Remember all that ❤

https://myalzheimersstory.com/2016/06/07/10-tips-to-help-you-tango-not-tangle/

https://myalzheimersstory.com/2016/01/10/10-things-to-remember-when-you-interact-with-people-who-forget/

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Advocacy, Challenges & Solutions, Toward better care, Videos

6 scary facts you should know about dementia care

July 2, 2016August 23, 2019 My Alzheimer's Story

Today’s dementia care partners, advocates and leading-edge experts fear that if we don’t take significant steps to create change, we’re going to face a massive care crisis in the near future. Families with members who live with dementia are already cracking at the seams. So are our healthcare systems. Here are six key things we need to think about (watch the excellent one-hour PBS documentary at the end of the post for more):

1 ) we will all be affected

Anyone can be affected by dementia, and eventually all of us will be touched by it in one way or another: either we will live with it ourselves, we will care for somebody who lives with it or we will know someone who lives with it or cares for someone who lives with it.

2 ) it’s very very expensive

Dementia care is expensive. In fact, dementia is the costliest condition in the United States, beating out cancer and heart disease. And most of the costs are not associated with healthcare, but with long term care. That means families usually bear the costs for caring for a loved one who lives with dementia. Many give up employment and deplete their savings to care for family members, which means they will be less able to care for themselves when the time comes.

3 ) systems are ill-equipped

Our healthcare systems and the medical professionals within them are, for the most part, ill-equipped to deal with people who live with dementia and to provide them with humane, dignified, and healthful care based on innovative care principles. Thousands upon thousands of elderly people with dementia are still physically and chemically restrained and warehoused in facilities where they wait to die. While there are exceptions, the vast majority of healthcare professionals don’t have the knowledge, skills, or the resources to provide state-of-the-art dementia care. That needs to change.

4 ) families are failing

Likewise, families of people diagnosed with dementia don’t know what they’re up against until it’s too late. They often become overwhelmed, exhausted, and frustrated because they simply don’t have the knowledge and/or skills required to care for someone who lives with dementia. Care partners live with depression and other serious illnesses and often die before those they care for. It’s a recipe for disaster.

5 ) a care crisis looms

Furthermore, experts agree the reliance on family caregivers is completely unsustainable. They say, for example, that the current ratio of caregivers available to provide care to somebody 80 years old and older in the United States is 7 to 1. Many care facilities are short-staffed as it is and the ratio is expected to drop to less than 3 to 1 by 2050. The situation is similar in other countries such as the Canada, the UK, and Australia. That means people now in their forties will face an acute shortage of people to care for them in their 70s and 80s.

6 ) we just don’t get it

Perhaps most frightening is how deeply we misunderstand and characterize the disease and the people who have it. For example, dementia care pioneer and expert Dr. Allen Power says: “Whether you are in your own home or a nursing home, we take people whose experiences are shifting and we put them in places based on our view of the world, our rhythms, our schedules, our staffing models, and we expect the people with changing brains to fit. If they can’t, we blame their dementia, and we give them antipsychotics medications.”

We need to approach dementia care in a whole new way. Our mindset must radically change. Our systems must be rebuilt. There are pockets of innovation, handfuls of care facilities that are doing things right (usually at prices beyond the reach of all but the wealthy), and strategies for moving forward. But they are not enough. This one-hour PBS Aging Matters documentary explores these issues in more depth; it includes interviews with people with dementia, researchers, authors, advocates and dementia experts such as Dr. Allen Power, and positive approach to care advocate and educator Teepa Snow among others. I highly recommend it.

https://myalzheimersstory.com/2016/03/30/20-ways-to-create-dementia-care-homes-away-from-home/

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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Advocacy, Care Partnering, Toward better care

being elderly and living with dementia is not a crime

June 28, 2016June 29, 2016 My Alzheimer's Story

Sometimes the simplest and most sensible ideas sound surprising when we first hear them. So it is with some of the concepts put forth by dementia care expert June Andrews, who believes we need to radically change dementia care.

“Professor June Andrews is on a mission,” says BBC host Ben Handley by way of introduction to the twenty-minute podcast below. Andrews’ mission began he continues “when she started her career as a nurse and witnessed what she thought was in many cases shockingly inadequate treatment of older people in hospital. She went on to become director of nursing at two general hospitals, she led the Royal College of Nursing in Scotland and has advised governments and health authorities at home and abroad.”

Andrews champions new approaches to dealing with dementia and argues that we need a low-cost “revolution” in elder care. She’s frank and open and isn’t afraid to speak her mind.

“Hospital is a terrible place for a person with dementia,” Andrews says. “The things that happened to them in hospital don’t make them better, they make them worse.” She says enormous amounts of money are wasted on delivering poor care, and she has some clear and specific ideas on how to create positive change. Listen to the podcast to learn more.

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Care Partnering, Teepa Snow, Tips, tools & skills, Videos

10+ smart dance tips for dementia care partners

June 22, 2016June 22, 2016 My Alzheimer's Story

Many of the challenges care partners face are not unique. They are similar to those we face daily in a variety of disciplines as well as in day-to-day living. This means potential solutions to problems are everywhere. Tips, tools and ideas abound. Identifying and applying them to caring can help make our work less stressful and more joyful.

When I stumbled upon Be a Smart Dancer: 10 Qualities of Smart Dancers on Ballet Shoes & Bobby Pins, I was struck by how the qualities of “smart” dancers might apply equally to care partners. I tweaked some of the actions and offer them here in condensed form as “10 smart dance tips for better dementia care.”

1) relate to space

Understand that you dance in a three-dimensional world. Smart dancers know about body directions and how they relate to space. Being spatially aware means you know how to use your space, how to travel upstage, downstage, stage right and stage left. You know not to stand too close to other dancers. You understand how a combination (of steps and moves) will travel so that you can properly set up, and not run out of room before being able to finish the combination. Spatially aware dancers don’t collide with other dancers or get in their way.

Hold space and make space for yourself, your care partner and others around you.

2) stay focused

Smart dancers know how to focus and find their centers–even on bad days. Through exhaustion and frustration, smart dancers pull it together under pressure. They are ready for anything at any moment. If a choreographer needs them to perform a role because someone is injured, they are ready. They push are able to push the chaos away and focus on the current space and time. Smart dancers know how to override stresses to get the job done.

When all hell breaks loose, find a way to come back to center. The triple “A”s in BANGS will help.

3) identify patterns

Smart dancers know the importance of identifying patterns. This helps them communicate and notate movement. When you can identify which part of the pattern you’re discussing, it helps other dancers know where in time and space you are.

Look for patterns in behaviour–your own, your care partner’s and those of others around you. Identifying patters helps determine cause and effect and creates the possibility for change.

4) tap into rhythm

The more you understand music and can hear rhythms inside of rhythms the more detailed, flowing and natural your dancing will become.

Even chaos has rhythm. Listen for it. Tune into it. Move with it.

5) observe

Pick up on details without being told. Smart dancers watch with the intention to digest information and commit it to memory.

Keep your eyes and ears open. Be a dementia care detective.

6) anticipate

Think ahead so you are not in the way. Anticipation is also useful when preparing for auditions and rehearsals. You never know what is going to happen or what you will be asked to do, so you have to prepare for everything.

Understanding that “anything can happen” (and it usually does!), is an extraordinary mindfulness tool that helps caregivers be flexible and let go.

7) make connections

Smart dancers also know the dance world is small, and they know how to interact with different people in order to stay successful. Making connections and understanding how their bodies work and how their discipline works is what keeps them on their toes.

You are not alone. Connect with other care partners. Being isolated is lonely, depressing and counterproductive. Reach out!

8) develop self awareness

Smart dancers know themselves and their weaknesses. Knowing how to take care of yourself is important. Understanding how to prevent injuries or care for injuries when they occur will get you back dancing faster.

Put the oxygen on yourself first. Take breaks. Replenish. Re-energize. Realize you are not a superhero.

9) use diverse techniques

Smart dancers are open to learning different techniques, they actively seek out innovation and educate themselves on what is new and different in the world of dance.

Keep adding to your care partner toolbox. I highly recommend the work of Teepa Snow, Dr. Allen Power, and Naomi Feil. When one tool doesn’t work, try another.

10) become single minded

Smart dances understand the responsibility that falls on their shoulders to dance and dance well; to train and train hard.

Take your responsibility seriously. Do the best you can.

I would add one more important action to this list:

11) experience the joy of dance

I think it’s probably fair to say there are few dancers who hate dancing. Smart dancers LOVE what they do. Yes, it’s hard work. Yes, it takes practice. Yes, there are defeats as well as victories. Dancers soar; they also stumble and fall. We all do.

Look for the joy.

TOP 10 MAS “10 TIPS LISTICLES”

7 forms of elder abuse and how to spot the signs to stop it

June 15, 2016June 15, 2019 My Alzheimer's Story

Elder neglect and abuse are poorly understood. This post is part of my effort to help change that.

The Royal Canadian Mounted Police (RCMP) defines elderly abuse thus:

“Elder Abuse refers to the violence, mistreatment or neglect that older adults living in either private residences or institutions may experience at the hands of their spouses, children, other family members, caregivers, service providers or other individuals in situations of power or trust.”

Elderly people who live with dementia are particularly susceptible to abuse because they may be less able to identify it or report it when it happens. They are extremely vulnerable, and we must be extra vigilant to ensure they do not fall victim to abuse, particularly by those who are meant to be caring for them.

Here are the forms elder abuse may take (compiled based information from the Canadian Network for the Prevention of Elder Abuse, the Royal Canadian Mounted Police and my own observations), and some of the signs to look for so you can take action to stop it:

Physical abuse

Hitting or handling an older adult roughly are forms of physical abuse, even if there is no injury, as are giving a person too much or too little medication, or physically restraining a person.

What to look for: untreated or unexplainable injuries in various stages of healing, limb and skull fractures, bruises, sores, cuts, punctures, sprains, internal injuries/bleeding, dislocations, black eyes, welts and signs of being restrained.

Sexual abuse

Forcing an older adult to engage in sexual activity is sexual abuse. It may include verbal or suggestive behaviour, not respecting personal privacy, sexual touching, or sex without the person’s consent (rape).

What to look for: venereal disease, genital infections, torn, stained, or bloody underclothing, vaginal or anal bleeding, bruising around the breasts or genital area.

Emotional abuse

Threatening, insulting, intimidating, humiliating and treating an older adult like a child are all forms of emotional abuse, as is preventing them from seeing their family members and friends. Emotional abuse may be difficult to identify and prove and it can devastate a person’s sense of identity, dignity, or self-worth.

What to look for: changes in behaviour such as emotional upset/agitation, biting, rocking, lashing out, repetitive movement. Emotionally abused people may become withdrawn, non-responsive, and/or verbally and/or physically aggressive. In the case of people who live with dementia, this kind of behaviour may wrongly be attributed to the disease.

Financial abuse

Tricking, threatening, or persuading older adults out of their money, property, or possessions is financial abuse. Misusing a power of attorney is a common form of financial abuse; it is often perpetrated by family members and/or legal guardians. Failing to provide elders with the care they need, deserve and can afford in order to preserve their estates for inheritance is a form of financial abuse.

What to look for: sudden changes in bank account or banking practice (unexplained withdrawals of large sums of money by a person accompanying the elderly person), signs that an elderly person has been coerced into signing a document (i.e. contracts, wills, mandates in case of incapacity, powers of attorney), someone is using an elderly person’s cheques without authorization, forging their signature, or misusing their money or possessions. Money and personal effects missing from their home.

Violation of rights and freedoms

It is a violation of rights and freedoms if somebody interferes with an older adult’s ability to make choices, especially when those choices are protected under the law.

What to look for: the the person stops going to church, temple, mosque or is prevented from engaging in their spiritual practices or traditions; mail or similar information is redirected; privacy is denied; family and friends are prevented from visiting; someone else dictates how they can spend their own money; institutionalization without a legitimate reason. This kind of abuse also includes restricting liberty, as well as denying rights to privacy, access to information, and available community supports.

Neglect

Failing to provide an elder person the necessities of life, such as food, clothing, a safe shelter, medical attention, personal care, and necessary supervision is neglect, which may be intentional or unintentional. Sometimes the people providing care do not have the necessary knowledge, experience, or ability, and are unintentionally neglectful.

What to look for: unkempt appearance, broken glasses, shoes and clothes that don’t fit, lack of appropriate clothing, lack of eyewear, missing hearing aids, dentures and other necessities; weight loss, malnutrition, dehydration, poor personal hygiene, frequent urinary tract infections (UTIs), untreated sores, hazardous or unsafe living condition or arrangements (dirt, fleas, lice, soiled bedding, fecal/urine smell); substandard or inappropriate medical care.

Systemic / institutional abuse

Systemic / institutional abuse refers to rules, regulations, policies, or social practices that harm or discriminate against older adults. Systemic abuse includes rules that are developed for an apparently neutral purpose, but that hurt elderly people. Some institutions operate to meet personal or financial goals that conflict with meeting residents’ health and environmental needs.

What to look for: use of physical restraints as an easy way to prevent falls; or diapering a person instead of helping them to the washroom, to save time or effort; staff shortages lead; overcrowding, mealtimes in shifts; low staff to resident ratios; substandard and/or unsanitary living environments; inadequate care and nutrition; inadequate activity; forced inactivity; no access to outdoors; aggressive / inappropriate staff–client relations; use of chemical restraints such as antipsychotic medications and physical restraints to exert control over the elderly for the sake of convenience and cost saving.

What to do if you see persistent signs of elder abuse:

Report what you see and hear to the elderly person’s family.
If the elderly person’s family members are the perpetrators, report to the appropriate authorities or ombudsmen. Finding the right people and places to report elder abuse in your area is relatively simple using the internet. Search: reporting elder abuse. I’ve included a couple of links below.
Do something. DO NOT REMAIN SILENT.

I believe the abuse of elderly people, particularly those living with dementia, is far more widespread than statistics indicate. Elderly people who live with dementia are still frequently chemically restrained using antipsychotic medication such as quetiapine (Seroquel) and risperidone (Respirdal); they are also physically restrained, and suffer all manner of systemic / institutional neglect.

Eldercare is in a state of crisis in North America and many other parts of the world, and it’s only going to get worse if we don’t wake up and make massive changes. Awareness is great, but a lot more action is required.

Here are some action-oriented links:

https://myalzheimersstory.com/2016/11/21/3-reasons-why-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

https://myalzheimersstory.com/2016/11/23/3-more-reasons-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

https://myalzheimersstory.com/2016/09/08/15-shocking-facts-about-the-abuse-of-elders-with-dementia/

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Take my short survey on behaviour here.

Copyright: lopolo / 123RF Stock Photo

Care Partnering, Teepa Snow, Tips, tools & skills, Videos

10 quick tips to help you tango not tangle

June 7, 2016June 9, 2016 My Alzheimer's Story

“If you want to change the dance, you’ve got to change the steps,” is a great coaching quote I learned way back when, and the most important part of the lesson is that the steps you must change are your own.

Here are 10 dance-inspired tips to help you tango instead of tangle with your dementia care partner:

Let them lead
Play music they like
Look into their eyes
Adjust your steps to fit theirs
Take their hand
Don’t hold on too tight
Be light on your feet
Guide only if and when required
Relax and smile
Twirl occasionally, just for fun

Additional inspiration on the same theme with renowned Hollywood lindy hop and jitterbg dancer Jean Veloz at her 90th birthday party in 2014 (she makes it look so easy):

Here’s Veloz in a similar number in her “younger” days:

“QUICK AND EASY” PRACTICAL TEEPA TIPS

7 dementia care basics from Teepa Snow

5 top dementia care tips from Teepa Snow

10 ways to calm a dementia care crisis

13 expert tips to help with “I want to go home”

10 tips to deal with hallucinations

Hand Under Hand (TM) demo

7 dementia care basics from Teepa Snow

February 28, 2016May 28, 2018 My Alzheimer's Story

When I began my journey as an Alzheimer’s dementia care partner, I knew nothing. If only I had known then what I know now. There are many more resources available than there were when I began caring for my mom full-time, and a whole new way of thinking about the disease and the people who live with it is emerging to empower us all.

Here are seven “how to get started” tips based on Teepa Snow‘s Positive Approach to Care:

1) Learn more about the disease

Learn what it’s going to do. Learn what it’s not going to do. Learn the basics. Dementia isn’t just about memory loss. The many forms of dementia are caused by brain changes that impact a person’s capacity to process information and do things. People living with dementia have different life skills. Their abilities change as the condition changes.

2) See it as a journey

Dementia is not static. Like life, it’s constantly evolving, changing, and morphing into something new. Smart people understand that it’s a “journey,” and it’s likely to be a fairly long one – think marathon, not sprint. You’re not just going away for the weekend, it’s more like moving to a new country.

3) Don’t be a Lone Ranger

It’s hard work being a care partner with someone who lives with dementia. It’s not a one-person job. It takes a team. Care partners need as much support as people living with dementia do. Ask for assistance. Seek resources. Put the oxygen on yourself first. Get an army of help. If family won’t help, find friends who will. If you don’t have friends who will, explore every other avenue you can. You can’t do it alone. Don’t try.

4) Learn “positive approach to care” skills

I know from experience this is one of the most important things. I self-taught myself as I went, but things would’ve been much easier if I knew then what I know now. In particular, the more you know how to deal with challenging behaviours in a positive and constructive way the less stressful and difficult your journey will be.

5) Become a care PARTNER

You will make lots of mistakes. That’s okay. But don’t keep doing something that doesn’t work over and over again and expect to get different results. If something doesn’t work, you need to change what you’re doing, because the person with dementia isn’t going to change their behaviour to fit your needs – you have to change to fit theirs!

6) Find resources

I highly recommend Teepa Snow’s videos many of which are available for free online and some of which may be purchased here. Likewise, Alzheimer’s non-profits around the world provide valuable information and support.

7) Learn the art of letting go

More about that here: the “G” in BANGS: five great ways to stop dimension anger, aggression and anxiety in their tracks.

MORE “QUICK AND EASY” PRACTICAL TEEPA TIPS

https://myalzheimersstory.com/2015/06/09/10-teepa-snow-videos-on-dementia-basics/

https://myalzheimersstory.com/2015/08/28/teepa-snow-demos-10-ways-to-calm-a-crisis-with-a-person-living-with-alzheimers-dementia/

5 top dementia care tips from Teepa Snow

13 expert tips to help with “I want to go home”

10 tips to deal with hallucinations

Hand Under Hand (TM) demo

Subscribe to MAS now & get 5 free PDFs & a page of welcome links:

Email Address

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Take a short survey on behaviour here.

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