People with dementia and financial abuse

– the warning signs and how to avoid it

By

When most of us go online to our internet banking account and set up a direct debit to pay a bill, we probably do it swiftly without much thought. But in reality it’s not that easy. In fact, there are a lot of complex processes involved in how we manage our finances, which older people, especially those with dementia, often struggle to deal with.

Dementia affects an estimated 850,000 in the UK, with numbers expected to rise to over a million in the next few years. Each year, dementia care is costing £26.3 billion in the UK alone. Most of this involves care in nursing homes and supporting people with dementia with their daily activities.

If we look at the whole raft of daily activities a person does, such as preparing a hot drink or a meal, or doing the laundry, financial management is one of the earliest tasks to deteriorate in dementia. These processes are complex, which is why people with dementia often struggle to count change, use a cash machine, pay bills or manage tax records sometimes even before their diagnosis.

Daily activities as a whole are often underpinned by a complex network of cognition. This can include different types of memory for past and future events, so the need to remember to do a task at 8pm tonight for example, involves problem solving skills, and attention. But there are other factors that can hinder someone when performing a task, such as motor problems or their environment.

Warning signs

In a recent analysis of a large data set collected from 34 clinical centres across the US, my colleagues and I looked at what kinds of behaviour are a warning sign for problems with paying bills and managing taxes in people with dementia.

When we obtained the data set, we only looked at people with dementia living in the community, who also had a family caregiver, and a diagnosis of the three dementia subtypes: Alzheimer’s disease, behavioural-variant fronto-temporal dementia, and Lewy body dementia. We then performed an analysis using statistical models to help identify the degree to which certain factors – such as language or motor skills – can predict a particular outcome. In this case, paying bills was the outcome for one model, and managing taxes was the outcome for the second model.

We found that between 11% and 14% of the ability to manage those financial tasks is predicted by executive functioning, or problem solving skills, language, and motor problems. So this means, if a person has problems solving difficult tasks, problems with language, they fall frequently and are moving slowly, and are also more likely to also struggle with financial tasks. Slowness and falls are particularly prominent in people with Lewy body dementia, which is different to Alzheimer’s disease, the most common form of dementia.

Get prepared

This knowledge can help people with dementia. Older people, including people with dementia, can often be subject to financial exploitation. This can be through online or telephone scamming, or knocking on someone’s door trying to sell something. And when people with dementia struggle using internet or telephone banking, they may be more prone to telling strangers their bank details.

A helping hand is needed for those living with dementia to manage their finances.

One way to support people in managing their finances may be to provide training to improve their cognition. It’s important to bear in mind that dementia is neurodegenerative. So while we can help people maintain certain skills for longer, there will come a point where full support for finance tasks is needed. This could involve arranging a lasting power of attorney and naming a person that is trusted to look after financial decisions.

Another way may be to adapt the homes of people with dementia to avoid falls and allow them to move around more freely. In our analysis, we found that falls were linked to poor finance management, meaning that noticing your loved one fall more frequently than usual could be a warning sign that they may also struggle managing their finances. If we can drag out the need for full support for as long as possible, we can help someone stay in their own home for longer. And that is exactly where people feel the happiest.

Other, larger financial questions loom for people with dementia, such as inheritance and dealing with payments for formal care – both at home and in future in a nursing home. These are big financial concerns, which should be discussed once a diagnosis is made, but ideally done before. That way the person is better able to judge what they think should be done with their money, and is less likely to be financially exploited than in the later stages of the condition. The Alzheimer’s Society has also produced some good further guidelines on how to deal with financial abuse in dementia.

While it may be the last thing someone wants to think about who has just received a diagnosis, the best way to avoid financial abuse is to put things in place right away. If that isn’t motivation enough, staying independent in all sorts of activities improves well-being. And that is our ultimate goal, whether we have dementia or not.

Complete Article HERE!

Sex Doesn’t Stop with Dementia

Study authors say clinicians shouldn’t forget that patients, partners still want it

by Judy George

Most people with dementia who lived at home and had a partner were sexually active, a national study of older adults found.

Of partnered people, 59% of men and 51% of women who screened positive for dementia were sexually active, including 41% who were 80 to 91 years old, reported Stacy Tessler Lindau, MD, of the University of Chicago, and co-authors in the Journal of the American Geriatrics Society.

This is the first study to establish nationally representative evidence about sexuality and cognitive function of older adults at home, Lindau said.

“Sexuality is an important aspect of life in aging, including for people with dementia,” she told MedPage Today. “We found that people with dementia, mild cognitive impairment, and no impairment share positive attitudes about sex and most said they were having sex less often than they would like.”

Untreated sexual dysfunction stops older people from deriving the full benefit of sex, Lindau added: “Our study shows that people with dementia, especially women, were not talking with their doctors about these problems.”

In this study, Lindau and colleagues analyzed data from 3,196 adults age 62 to 91 from the National Social Life, Health, and Aging Project, a longitudinal study conducted by personal interviews and leave-behind questionnaires that included spouses and cohabitating partners. They used an adapted Montreal Cognitive Assessment (MoCA) to classify participants into normal, mild cognitive impairment, and dementia categories.

Their analysis showed:

  • Of all home-dwelling people with dementia, 46% of men and 18% of women were sexually active
  • Of home-dwelling partnered people with dementia, 59% of men and 51% of women were sexually active
  • Many men and women — including 74% of men and 38% of women with dementia — regarded sex as an important part of life
  • More than one-third of men and one in 10 women with dementia reported bothersome sexual problems, especially lack of interest in sex
  • About one in 10 people of both sexes felt threatened or frightened by a partner
  • More men (17%) than women (1%) with dementia spoke with a doctor about sex
  • The likelihood of sexual activity was lower among partnered people with worse cognitive function

“Physicians need to balance the dignity and autonomy of the person with dementia who desires sex with the need to protect the person from harm,” said Lindau, who posted a blog with resources for clinicians seeking guidance about sexual consent. “Our study tells physicians that sexual activity is common among home-dwelling people with dementia and should not be ignored or dismissed as an important aspect of life with dementia.”

This study has several limitations, the authors noted: the reliability of survey responses may decline with worse cognitive function. People with signs of overt dementia that was evident to the study interviewers were excluded. The study centered mainly on male-female partnerships and does not yield insights about same-sex relationships.

Complete Article HERE!

Dementia Patients and Grief

 

[T]he death of a loved one is difficult for anyone, but it is a special challenge when someone in the family has dementia. It’s hard for family members to know how and when to tell the person with dementia about the death. And what should they do when the person doesn’t remember?

Coping With Losses

People with dementia have had many “little deaths” in the course of their disease — things like losing their independence and the ability to drive, read, cook, or enjoy hobbies. Memories and relationships are huge losses.  These losses are stressful for people with dementia and their families.

How people with dementia cope with loss is affected by many things, including: the stage of their dementia, their relationship to the person who has died, how often they were in contact with that person, and their personal way of grieving

Grief Process

For people without dementia, recovery from a death usually involves accepting the reality of the loss, learning to live with it, and finding a new “normal.”  For most, the pain of the loss can transform into beloved memories.  For someone with dementia this process is often impossible.

People with dementia who are grieving are often agitated and restless. They may sense that something is not right, something is missing. They may confuse one loss with another. A recent death may stimulate the memory of loss from childhood. It can be stressful for family members to decide when and how to tell them about the death of a loved one — and even how often to tell them. Repeatedly telling a person with dementia about a death can make family members’ grief more painful.

Telling About a Death

Here are some hints for telling a person with dementia about a death:

    • Tell the news as soon as possible. They will sense that something is wrong and need information to understand, even if just for that period of time.
    • If you are too emotional to talk to them, find someone else — maybe a friend or healthcare professional.
    • Choose a time to talk when the person with dementia is well rested.
    • Use short, simple sentences. Don’t give too many details; this may overwhelm them.
    • Answer questions as honestly as possible.
    • Use clear words like “died” instead of “passed away” or “at peace now.”
    • Try not to protect the person from the truth by suggesting that the person who has died is away and will return later. This can cause worry and agitation later when the person does not return.
    • You can support them with physical touch, such as a hug or holding hands.
    • Consider involving the person with dementia in funeral planning, assigning a simple task. This will help the death be more real for them. They may recognize the rituals around death and act appropriately.
    • Plan for someone to be with the person during services who can also take them out if they become agitated.

Accepting Death

Here are some ideas of ways to help the person with dementia accept the death:

    • Speak in the past tense about the person who has died. For example, “I loved Mom’s holiday cookies.”
    • Talk with them about the person who has died and express your sadness. “I sure miss Dad. He always made birthdays so fun, didn’t he, Mom? Remember when he….” Bring out pictures and tell stories if this helps their grief process.
    • Accept how often they want to talk about the person who has died—perhaps frequently, not much, or maybe not at all.

If over time they continue to ask for the person who has died, there are some things you can do. In the beginning, gently remind them that the person has died. If reminding them becomes upsetting, you can try these ideas:

    • Respond to the emotion under their words, feelings like sadness, longing, fear, distress, suspicion, anger, concern, or confusion. You can respond to what you see:
      • “You sound really frightened (or lost, or angry, etc.) to me. Let me help you with that.”
      • “You must really be missing her. Tell me what you miss most.” Share your own feelings: “I miss her, too.”
    • Check their mood at the moment. If the person is unaware and not distressed, you don’t need bring up the reality of what has happened.
    • Look for patterns in the times they ask for the person who has died. Look for an unmet need. For example, if the person who has died usually brought them coffee in the morning, the change in this routine could be distressing and remind them that their loved one is not there.
    • Use distraction only when other ways of dealing with their grief are not working.

Each family has to find what works for them, and then try to be as consistent as possible. You may want to write out a simple plan for all family members and visitors to follow.

You can be most supportive to the person with dementia if you also take care of your own needs and get support.  We encourage family members to find support to help them cope with the painful, frustrating, lonely and sad feelings that they may feel. Supporting the person with dementia takes patience, but family members should remember to be patient with themselves as well during this stressful experience.

Complete Article HERE!

Alzheimers Q&A: What is an AIM Program?

[T]he Advance Illness Management (AIM) program/model was developed to provide home-based palliative care and management of transitional care for individuals with advance chronic disease. The AIM program benefits those who are not yet ready for hospice or have refused to elect a hospice program.

For the most part, AIM is essentially a specialized home care program. It is not hospice. Whereas traditional home care services promote recovery and rehabilitation and the individual is admitted and discharged quickly, the AIM program promotes transition between end-of-life care for individuals with late-stage illness. Moreover, AIM focuses on symptom management and comfort.

Traditional home health services are offered to individuals with a brief illness or debilitating circumstances that are not considered terminal. Palliative home health services are provided to those facing terminal illness who wish to continue life-extending or curative treatment or need more time to explore options. The AIM program manages the needs of individuals facing terminal illness. A person can transition into hospice care if and when that decision is made, with no change in the consistent caregiver.

In order to participate in an AIM program, individuals must satisfy at least two of the following criteria:

• Advance cardiac disease, end-stage pulmonary disease, end-stage liver disease, end-stage Alzheimer’s or dementia, other end-stage diagnoses or advanced debility and decline.

• Non-palliative treatment of primary disease process is failing or losing effectiveness, such as when cancer chemotherapy is ineffective.

• Individual has poorly controlled pain or other end-of-life symptoms.

• A decline in functional and or nutritional status in the past 30 days.

• The person is eligible for hospice but refuses enrollment.

The AIM palliative home health visits are less frequent than hospice visits, yet the person and his or her family are provided similar services as those received through hospice from the same qualified and compassionate staff, while they continue to see curative treatments. And, with the AIM program, if at some point the individual and family decide to utilize the services of hospice care, they have the comfort of knowing that their team of health care providers will remain the same.

For more information about the services provided by AIM, check with your physician or health care provider.

Complete Article HERE!

New study looks at end-of-life decision making for people with intellectual disabilities

by Bert Gambini

 
[A] new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities.

Most states in the U.S. have programs that allow to document their end-of-life decisions. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures , including EMS providers, should take near the end of a patient’s life.

Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient’s pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.

Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated. Jacqueline McGinley, a doctoral candidate in UB’s School of Social Work, joined their research team and served as first author for their most recent work.

Through a series of interviews with five different agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.

“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says McGinley. “But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.”

That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.

She says the EMS providers’ charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect. Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study’s results suggested.

But questions remained.

“We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity” says McGinley.

There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.

Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person’s end-of-life decision-making.

The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population. Still, this sociocultural context must be strongly considered as future research explores how people with intellectual engage in end-of-life discussions.

Since January 2016, Medicare pays for patients to have conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.

“What’s most important in all of the work we do is knowing that people can die badly,” says Waldrop. “We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction.”

Complete Article HERE!

Is it Possible to Die of a Broken Heart?

After 55 years of being by his side every day, being apart was more than she could handle when he became ill.

by

[S]omehow she knew it would be the last time she saw him. They had lived together in their house for 37 years until it became necessary to move to an Assisted Living Facility. Not their choice at all, but they could no longer maintain their home, their finances, their nutritional needs and more.

They met in their mid-twenties on a blind date at the beach. They sat on a blanket smoking cigarettes; she, shy and unsure of herself, was immediately intrigued and attracted to the young man a year and a half her junior. She must have had an open heart; he had just had all his teeth pulled. She didn’t care; she saw a kind and gentle soul. Two months later, he had a new set of teeth and a bride, marrying in his parent’s backyard.Within five years they had two children, a boy, and a girl, just like she wanted. She loved being a mom and a wife. They moved as a family across the country twice, settling in Central Florida and buying a home after many years of renting.

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My parents rarely fought. They bickered and disagreed, but I don’t remember any ugly scenes. I just remember love. Whenever they did get on each other’s nerves, it didn’t last long. Especially if  I put their favorite song, The Nearness of You, on the record player. It was impossible for them not to stop fussing and begin to laugh and hug and kiss each other when they heard it.

They loved each other’s company. It was rare they were apart if they weren’t working. They just loved to be together. A lot of husbands don’t enjoy going to the grocery store with their wives. Dad always did. Probably to keep her from spending too much, but regardless, they did it together. I have many memories of them walking through grocery stores and malls holding hands. My parents didn’t have any issues with public displays of affection.

I have fond memories of them bowling and square dancing together too. They got up together every morning, and went to bed together at the same time every night, after the evening news. When they both retired, they drove around the country, stopping to visit friends and family. Just the two of them. Inseparable.

As with many people, aging was not kind to my mom and dad. He went through a bout of Leukemia and shingles. She – a heart attack, congestive heart failure, kidney issues and breathing trouble. Her heart surgery went fine, but she contracted MRSA in the hospital and required more intensive surgery that she nearly didn’t survive.

But she pulled through. She was a fighter and she needed my father. And he needed her too. He sat by her side every day in ICU, then at the long-term hospitals and rehab facilities where she was moved for recovery.

Finally, she came home and they enjoyed a few quieter years together with me checking on them daily.

But there soon came a time when they needed more. Much more.

Dad was showing signs of Dementia. Medicine and meals were missed. Food was rotting in their fridge. Bills weren’t getting paid. Little by little, their well-being was eroding and I was struggling to help them maintain.

It took a crisis of their phones being shut off and nearly their electricity too, to really understand their situation, and while it was one of the toughest decisions I ever made, I moved them to an ALF and sold their home.

For a while, Dad did well. Even though he had early dementia, he still was able to drive and he became involved in activities. Mom was less happy, but she was safe, her medications were managed for her and I was finally able to sleep.

And for a couple years, life was status quo. Until it wasn’t.

Little by little, Dad’s mind began to slip and then continued to slip away. It started with him sleeping more than usual which I attributed to depression; sleeping is a great escape when you feel you are “having your life taken away from you.”

And the slide continued. His confusion increased as his cognitive mind decreased. One of the hardest days was having to take his car away. His self-care began to erode. There were days he didn’t get dressed or shave. He wasn’t eating very much. He slept much more of each day than he was awake.

Mom was frightened. She felt isolated and alone. I could tell she was grieving as she watched the man she loved so deeply slowly disappear. I felt the grief as well. The meds the neurologist prescribed we had hoped would slow down what was happening to his mind. didn’t seem to be slowing down anything at all.

Then the phone calls from the ALF staff began.

“We are having a problem with your father. He is wandering into other resident’s rooms.”

We all knew it wasn’t intentional. He just had no idea where his apartment was, after five years of living there. And with each passing day, it became obvious he needed more help with activities of daily living as he could no longer care for himself and Mom was unable to care for him.

This was where the heartbreak began. Dad had always provided for the family and Mom and always been, well, Mom, the nurturing rock as many mothers are. When she became sick, he took over, administering her medications including insulin four times a day. Now neither of them could help each other and he was becoming a shell of the man he used to be.

A painful decision was made to move him to the Alzheimer’s unit. My parents had never been separated before. Mom moved to a smaller apartment a short time after. She became increasingly depressed as his mind continued to drift.

I spent hours trying to reach him. Singing to him. I have read many studies that music is the last thread some Alzheimer’s patients hang onto and there were times he would nod and hum along.

Mom hated going to see him in the Alzheimer’s unit. It bothered her immensely. My stress increased as well trying to help both of them. She called me often, leaving voice mails if I wasn’t available, always asking about my dad. How was he? She was so worried about him. Her grief was palpable.

About six weeks after his move to the unit, Mom asked to go see him. Her color was not good. We entered the unit and found Dad sitting outside his room in his chair – the one I brought down so he would have something familiar. He seemed lost in his own world.

I paused as I heard the music on the sound system. The Nearness of  You was playing. What were the odds that their song was filling the room. Divine intervention perhaps?

“Dad,” I whispered in his ear. “Listen. Do you hear the music? It’s your song. And look, it’s your bride.”

He nodded slightly and looked at Mom. I began to sing in his ear the words and he continued to nod. I glanced at Mom; tears were running down her cheeks. Somehow I helped him stand up, and she did too and they gave each other a hug. I asked him if there was anything he wanted to say to her and he croaked out “I love you,” in a raspy voice, then sat down and closed his eyes.

Mom was shaking by now and asked me to take her back to the main area, out of the Alzheimer’s unit. It was just too painful for her.

The next day, the call from the ALF was not about him, but her. She was being rushed to the hospital: her broken heart had stopped beating.

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Complete Article HERE!

While I still can: dementia and assisted death

By Mark Brandi

[A] friend recently lost his father to dementia, but not before witnessing a small miracle.

In his final days, despite having been non-verbal for more than two years, his father suddenly became fluent and conversational. He recognised relatives by name and regaled them with old tales, offering his grandchildren a brief, magical glimpse of the man he once was.

Even in the Netherlands, where assisted dying is well established, access by dementia sufferers is the subject of ongoing debate.

The only problem? He thought it was 1953.

Dementia is an insidious and peculiar disease. And it poses difficult questions about the nature of identity. What is it that makes us who we are? And at what point do we lose our sense of self?

As Victoria moves toward a scheme of assisted dying for the terminally ill, one of the recommended preconditions is a “sound mind”. As such, a parliamentary committee (invidiously tasked with an “inquiry into end of life choices”) has recommended dementia sufferers be excluded from the scheme.

On the face of it, this appears logical, as there are obvious risks in allowing others to decide what is tolerable for a patient. But is the potential for abuse a good enough reason to deny access to all dementia sufferers?

An alternative – which the committee does not support – is the provision of an advance directive. While still able to make decisions, we could outline future circumstances (such as the late stages of dementia) where we might consider our lives unbearable. Such measures have been in place in the Netherlands since 2002.

If an advance directive were allowed here, it could include tailored safeguards – such as the opinions of trusted family and friends – about the quality of our lives (in addition to the standard battery of medical tests).

But even in the Netherlands, where assisted dying is well established, access by dementia sufferers is the subject of ongoing debate. It remains an area of deep moral, ethical and practical complexity.

It is also one in which I have a personal stake – my father has advanced dementia.

Over the past three years, he has lost capacity for the things he once enjoyed – politics, gardening, and even freedom to leave the home unaided.

If an advance directive had been available before his illness, it is possible (if not likely) he would have opted out.

Yet my father might now be described as – what some cheerfully term – “happily demented”. He is usually in good spirits, enjoys the pleasures of food and family, and is physically active. By some measures, he might be more content than before his dementia.

Such circumstances are not isolated. In evidence to the parliamentary inquiry, one carer stated: “I know the man my husband used to be, and I know he would not want to be the man that he is today; however, he is happy as the man he is today … whose version do we hold with, or think is more valid?”

This question cannot be answered with certainty.

For example, in the later stages of dementia, we may not appreciate a film in the same way we do now. But we may find pleasure in the sight and sound of certain actors, or even the appearance of particular colours on the screen.

Still, we cannot know how the disease might manifest in individual cases. And there are risks in allowing dementia sufferers to be part of the scheme. But these risks must be weighed carefully against our right to make important choices about our lives.

Should the parliamentary committee’s recommendations be followed, my father will not face such a crucial decision. Whether there may be a small miracle near the end of his life, time will tell.

We, his family, can only bear witness.

Complete Article HERE!