Category Archives: Dementia & Carers

Most caregivers of people with dementia are family members, and they need help

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Daily tasks such as cooking and cleaning are out of the reach of many seniors.
Nancy Beijersbergen/Shutterstock.com

Alan Stevens, Texas A&M University ; Carole White, University of Texas at Austin; Marcia G. Ory, Texas A&M University , and Sandhya Sanghi, Texas A&M University

Family care of an older adult has emerged as an essential element of the U.S. health care system, with 83 percent of long-term care provided to older adults coming from family members or other unpaid helpers. As the population of older adults grows, so too does the expectation of family care for persons living with dementia.

We have engaged in decades of research, documenting the impact of dementia caregiving on the health and well-being of the caregiver. We have also conducted research to create evidence-based interventions that can be defined as structured programs with positive results that have been scientifically proved through clinical trials.

We have learned much from family caregivers who report that the amount and type of care expected of them is growing, and have concluded that caregiving demands should be matched by community-based support systems. We have advocated for the adoption of one evidence-based intervention, called REACH II (Resources for Enhancing Alzheimer’s Caregiver Health II), which is designed to help caregivers manage daily care into health care and community-based organizations.

Challenges to family caregiving

The toll of caregiving can be financial as well as physical.
nuiza11/Shutterstock.com

Family caregivers experience multiple challenges daily when caring for a person with dementia, whose care needs steadily increase as cognitive abilities decline. Care burdens can have high physical, emotional and financial costs. An overview, or a meta-analysis, of 84 studies found that caregivers experienced more depression and stress than non-caregivers.

More recently, AARP reported that more than one in three, or 36 percent to be specific, of family caregivers who were not currently in the labor force said they retired early or quit their jobs because of family caregiving concerns.

Despite the critical role that family caregivers play, support programs based on evidence based interventions are not widely available. The National Academies report Families Caring for an Aging America concluded that “few of the nation’s millions of family caregivers of older adults have access to evidence-based interventions.” Moreover, caregivers are often marginalized or ignored by formal health care providers of the person with dementia.

Supporting family caregivers

Interventions that combine education about dementia and advice about specific “do’s and don’t’s” of dementia care with guided training and practice appear to be of greatest value to family caregivers. This approach of providing multiple types of support and training allows the intervention to address the vast spectrum of challenges faced by caregivers and allows support and training activities to be tailored to the unique needs of each family.

While scientific research has demonstrated the value of providing education, skills training and support to family caregivers, we have found in our research that health care and social service providers do not routinely provide support programs based on evidence-based interventions. Thus, for the vast majority of family caregivers, caregiving support services remain extremely fragmented if not elusive. Family caregivers are often left alone to provide care that can be complicated and exhausting 24/7.

From our experience, the lack of caregiving support services that are evidence-based is not solely driven by neglect from health care and social support service providers. Rather, existing evidence-based interventions require dedicated personnel who must be trained to deliver the intervention, yet the delivery of the intervention are not covered by Medicare and other third-party payers.

Additionally, family caregivers are often either unaware of existing services, or they are unable to participate due to emotional stresses, time commitments or scheduling concerns. Finally, there are systemic barriers associated with the failure to translate research into practice, resulting in limited program implementation by community-based agencies that provide care to older adults and assistance to dementia caregivers.

Without care for the caregiver, the system crumbles

Love for a family member is often not enough to meet the tough demands of caregiving.
Robert Kneschke/Shutterstock.com

We believe that forging strong partnerships between health care systems that frequently see patients with dementia and the community-based organizations that provide ongoing supportive services that help caregivers develop skills to deal with negative behaviors associated with memory loss (e.g., agitation or wandering) is necessary to bridge the gap in caregiving services.

Leveraging technology, such as offering online information and support to increase educational opportunities and perhaps even automating some aspects of intervention delivery, will help ensure access to services to the widest possible audience. Working directly with employers to provide proven services to the workforce could mitigate the negative economic impact of premature employment reduction.

While changes in the health care system and workplace are important, we believe that all sectors of our society need to more formally recognize family caregiver services. Such an approach can change attitudes, reduce stigma and foster caring and supportive behavior toward those living with dementia. One example is the Dementia Friendly America initiative, a national effort to support and serve those who are living with dementia, their caregivers and families.

Communities are also taking action by leveraging tailored resources in business, community-based services and supports, faith communities, health care communities, legal and financial services, local government and residential settings.

While improvements are needed in all community sectors recognized by the Dementia Friendly America model, this is especially so in the health care sector. Family caregivers are the source of greatest impact on the health of a person living with dementia, yet are often excluded in conversations with the person’s health care providers. Health care providers should be encouraged to document the role of the family caregiver in the a patient’s electronic health record.

Also, health care providers should make every attempt to involve the family caregiver in all health care interactions, especially in discharge planning after a hospital stay. As a sector, health care systems can also facilitate a dementia friendly approach by directing families to community-based social support services to address common challenges such as getting medications and transportation to health care appointments.

There is a role for higher education as well. Colleges and universities could help prepare a dementia-friendly health care work force to meet the needs of the growing numbers of persons with dementia, estimated to nearly triple by midcentury with an American being diagnosed with dementia every 33 seconds. Attention to dementia-friendly practices such as differentiating dementia from normal aging, early investigation of dementia symptoms by a health care professional and basic training in how to communicate with a person with dementia should be encouraged across the social and health disciplines.

Our care system depends heavily on family caregivers. If their needs are not recognized and addressed, family caregivers risk burnout from the prolonged distress and physical demands of caregiving, and the nation will bear the costs.The Conversation

Alan Stevens, Professor of Medicine; Director, Center for Applied Health Research, Texas A&M University ; Carole White, Professor and Nancy Smith Hurd Chair in Geriatric Nursing and Aging Studies, University of Texas at Austin; Marcia G. Ory, Regents and Distinguished Professor, Associate Vice President for Strategic Partnerships and Initiatives, Texas A&M University , and Sandhya Sanghi, Assistant Investigator, Texas A&M University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

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What is ‘quality’ in aged care? Here’s what studies (and our readers) say

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Social connections help retain a sense of purpose in older age.
from shutterstock.com

Joseph Ibrahim, Monash University

A challenge facing the recently announced Royal Commission into Aged Care Quality and Safety will be to define “quality”.

Everyone has their own idea of what quality of care and quality of life in residential aged care may look like. The Conversation asked readers how they would want a loved one to be cared for in a residential aged care facility. What they said was similar to what surveys around the world have consistently found.

Characteristics that often appear as the basis for good quality of life include living in a home-like rather than an institutionalised environment, social connection and access to the outdoors. Good quality of care tends to focus on providing assistance that is timely and appropriate to individual needs.




Read more:
Australia’s residential aged care facilities are getting bigger and less home-like


A bleak view of aged care

A mature judgment to determine good quality requires us to recognise that many people have an instinctive and distressingly bleak view of ageing, disability, dementia and death. Some people express this as death being preferable to living in aged care, as the tweet below shows.


Twitter

This doesn’t necessarily reflect an objective assessment of the actual care being delivered in residential facilities, but it does speak to the fear of losing independence, autonomy and identity.

In a survey of patients with serious illnesses hospitalised in the US, around 30% of respondents considered life in a nursing home to be a worse fate than death. Bowel and bladder incontinence and being confused all the time were two other states considered worse than death.

Aged care facilities will be the final residence for most before they die. This means the residents’ sense of futility and the notion one is simply waiting to die can and should be addressed.




Read more:
How our residential aged-care system doesn’t care about older people’s emotional needs


Loose-leaf tea can make someone feel at home.
Matt Seymour/Unsplash

Our reason for being is usually expressed through social connections. This a recurring theme for residents who define quality of care as whether or not residents have friendships and are allowed reciprocity with their caregivers.

A systematic review that drew together a number of studies of quality in aged care found residents were most concerned about the lack of individual autonomy and difficulty in forming relationships when in care.

Good staff

The need for positive social connections for residents extends to the relationships between staff and families. Achieving this requires staff with a positive attitude who work to build trust and involve family in their loved one’s care. They must also engage on issues that have meaning to the individuals.

Good staff should be both technically proficient and, perhaps more importantly, good with people.

Dianne Wintle comment.
Facebook screenshot

Idyllic, or the way it should be?

A home-like setting – which may include having a pet and enjoying time in nature, as the Tweet below describes – may seem idyllic. However, more contemporary models of care are moving towards smaller home-like environments that accommodate fewer people and are more like a household than a large institution.


Twitter

The ability to relate and personalise care to a small group of 10-12 residents is surely easier than catering to 30-60 residents. Some studies in the US have shown residents in such smaller units have an enhanced quality of life that doesn’t compromise clinical care or running costs.




Read more:
Caring for elderly Australians in a home-like setting can reduce hospital visits


This cluster-style housing still has limitations that need to be addressed. These include selecting residents who are suitable together and catering for the changing clinical and care needs of each individual.

Pets and the outdoors

Research into the value of pets in aged care has largely focused on the benefits to people living with dementia. Introducing domestic animals, typically dogs, has been shown to have positive effects on social behaviours, physical activity and overall quality of life for residents.

Pets improve quality of life for people living with dementia.
from shutterstock.com

Similarly, providing accommodation where the physical environment and building promote engagement in a range of indoor and outdoor activities, and allow for both private and community spaces, is associated with a better quality of life.

Good food

Another major determinant of quality of life in residential aged care is the quality of food. This becomes even more important as people age. Providing high-quality food and enriching meal times is more challenging as many diseases such as dementia and stroke affect older people’s dentition and swallowing.


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Aged care services need proactive and innovative approaches to overcome these deficits and better promote general health.

A key feature often overlooked is the cultural significance of food. Providing traditional foods to residents strengthens their feeling of belonging and identity, helping them hold on to their cultural roots and enhance their quality of life.

Safety, dignity, respect and choice


Twitter

While the focus is often on preventing abuse, neglect and restrictive practices in aged care, the absence of these harmful events doesn’t equate to a positive culture. Residents want and have a right to feel safe, valued, respected and able to express and exercise choice. Positive observation of these rights is essential for quality of life.

Clinical and personal care

Time is a factor in aged care, as staff often don’t have enough time to spend with each resident. A recent ABC Four Corners investigation into quality in aged care found personal care assistants had only six minutes to help residents shower and get dressed. No wonder, then, that staff often don’t have the personal time to be able to spend with residents who need life to be a little slower, as the Facebook comment below shows.

Jo Art comment.
Facebook

Clinical care is another important aspect of quality aged care. A resident cannot enjoy a good quality of life if their often multiple and chronic conditions such as diabetes, heart failure and arthritis are poorly managed by their doctors and nurses.




Read more:
Australia’s aged care residents are very sick, yet the government doesn’t prioritise medical care


Residents in aged care are the same as those who live in the community. They are people with the same needs and wants. The only difference is they need the community to give the time, effort and thought to achieve a better life.The Conversation

Joseph Ibrahim, Professor, Health Law and Ageing Research Unit, Department of Forensic Medicine, Monash University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Exercise May Lessen Risk of Falling for Older Adults who have Alzheimer’s Disease and Mental Health Challenges

active bikes cyclist elderly

Photo by Public Domain Pictures on Pexels.com

News Release
October 2018 | USA – Exercise May Lessen Risk of Falling for Older Adults who have Alzheimer’s Disease and Mental Health Challenges

Journal of the American Geriatrics Society Research Summary

Alzheimer’s disease (AD) is a brain disease that causes changes that kill brain cells. AD is a type of dementia, which causes memory loss and problems with thinking and making decisions. People with AD and other forms of dementia have difficulties performing the daily activities others might consider routine.

Dementia takes a toll on those who live with it—and it also places a burden on caregivers. Along with problems connected to memory, language, and decision-making, dementia can cause neuropsychiatric symptoms, such as depression, anxiety, changes in mood, increased irritability, and changes in personality and behavior. People who have AD/dementia also have twice the risk for falls compared to people without dementia. About 60 percent of older adults with dementia fall each year.

Researchers suggest that having neuropsychiatric symptoms might predict whether an older person with AD/dementia is more likely to have a fall. We also know that exercise can reduce the number of falls in older adults with dementia. However, we don’t know very much about how neuropsychiatric symptoms may increase the risk of falls, and we know even less about how exercise may reduce the risk of falls for people with dementia and neuropsychiatric symptoms. A research team decided to explore whether exercise could reduce the risk of falling among community-dwelling people with AD who also had neuropsychiatric symptoms.

To learn more, the researchers reviewed a study that investigated the effects of an exercise program for older adults with AD (the FINALEX trial). The study included a range of people living with different stages of AD/dementia and with neuropsychiatric symptoms. Their findings were published in the Journal of the American Geriatrics Society.

The original FINALEX study examined and compared older adults who had home- or group-based exercise training with people who didn’t exercise but who received regular care. The researchers learned that the people who exercised had a lower risk for falls than those who didn’t exercise. There was also a higher risk for falls among those who had lower scores on psychological tests and who didn’t exercise.

man running at marathon event

Photo by Luka Siemionov on Pexels.com

This study revealed that people with AD/dementia and neuropsychiatric symptoms such as depression and anxiety have a higher risk for falls. Exercise can reduce the risk of falling for older adults with these symptoms. Further studies are needed to confirm these results.

This summary is from “Relationship of neuropsychiatric symptoms with falls in Alzheimer’s disease—Does exercise modify the risk?” It appears online ahead of print in the Journal of the American Geriatrics Society. The study authors are Hanna-Maria Roitto, MD; Hannu Kautiainen, biostatistician; Hannareeta Öhman, MD; Niina Savikko, RN, PhD; Timo E. Strandberg MD, PhD; Minna Raivio MD, PhD; Marja-Liisa Laakkonen MD, PhD; and Kaisu H. Pitkälä, MD, PhD.

This entry was posted in JAGS Research Summaries and tagged Alzhe, dementia, exercise, physical activity by HIA Guest Blog.

Doubting a diagnosis of dementia

A brilliant article by Kate Swaffer and a must read. I have been saying this over and over again, having worked in imaging for a short while. MRI and procedures for scans are stressful and distressing. And the whole process of diagnosis is just a mind field for everyone.

In the last few weeks, there have been a few articles, blogs or tweets on the impact of others publicly doubting a persons diagnosis of dementia, which I am highlighting here for your weekend reading! One tweet by a professional last week claimed with certainty some people don’t have dementia. Whilst it didn’t name anyone, it was disturbing. I’m reasonably certain, in the same way people rally around someone diagnosed with cancer, they also never doubt the diagnosis, including when the person ‘does better than expected‘.

People with cancer (or any other ‘mostly invisible’ diseases) are never diagnosed or doubted publicly, including by others after a conversation, presentation or after reading a book or blog. I can never tell who in a room has heart disease, diabetes, and in the early stages of conditions such as multiple sclerosis, and even Parkinson’s. It is the same for people with dementia as…

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How to help people with dementia retain the power of choice

How to help people with dementia retain the power of choice

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Which pair?
Monkey Business Images/Shutterstock

Rebecca Sharp, Bangor University and Zoe Lucock, Bangor University

Deterioration in the ability to produce complex speech or understand what people are asking, can make it difficult for people with dementia to make choices in conventional ways. It can be simple things like deciding which clothes to wear, or what to have for dinner. But when a person is in the more advanced stages of dementia, and may not be able to speak at all, it can be difficult for those caring for them to work out what their preferences would be.

To help the estimated 280,000 people with dementia who are living in UK care homes, family members are often asked what their loved ones would prefer and notes are made by staff. But we know that people’s preferences can change, sometimes on a daily basis, and are hard to predict even by people who know them really well.

Take the example of Mrs Jones. Care workers know that she likes both tea and coffee, but that she prefers tea. If Mrs Jones finds it difficult to tell them what she wants, how will they know that today is the day that Mrs Jones fancies a coffee?

Behavioural researchers have found that one way to figure out what a person would like is to measure how they respond when provided with different options at the same time. For example, to find out whether a person prefers a biscuit or a scone, the two treats are presented together for the person to choose.

As the person making the choice is unable to speak, physical behaviours such as reaching, touching, and picking up the item are watched to find out which they would like. Studies which use this method are usually done with people with dementia in their care home, and tailored to the individual taking part. While the researchers can find out what works best, it also means that people with dementia benefit directly from taking part in the study. Staff are also shown how to find out preferences – leading to immediate improvements in care.

Though it seems like a simple thing to put into practice, this “choice” method is not currently part of the UK care system. However, we have been testing to see whether it could be used in all care homes, to give everyone with dementia more choice in a place where it has traditionally been limited. By observing what people do rather than what they say, care staff can get a more objective idea of what people like, measure their preferences daily, track how they change, and – most importantly – give people with dementia and communication issues more of a voice in their daily lives.

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Our work forms part of the first UK project of its kind in the field of behavioural gerontology. The preferences research is part of a series of studies all focused on using behaviour analysis to help improve the quality of life of people with dementia. In addition, students on Bangor University’s applied behaviour analysis programme are trained to specialise in this approach with older adults.

Though the project itself is due to go on for another year, we have already confirmed previous findings from US-based care home studies which showed that people with dementia prefer activities over food items when given a choice between them. For example, we found that people chose activities such as jigsaws, crosswords, and crochet over treats such as custard tarts and pork pies.

This might be because one risk for people with dementia in long-term care is that they can spend a lot of time unengaged. It can be difficult to find lots of meaningful activities for care settings, and opportunities for conversation can be reduced. So activities become more valuable because they give people something to do and to talk about with other people, while food might become less valuable due to sensory changes associated with dementia such as changes in ability to taste and swallow.

Putting this into practice, we now know that if a person with dementia is to be given food and activity choices, they should be done separately – rather than at the same time, like the biscuit and scone example – as preference for taking part in an activity might overshadow a food choice. In the long run, this means that staff don’t learn what people’s food preferences are, too.

For the next stage of our research, we are going to work with people with developmental disabilities (for example, Down Syndrome) who develop dementia. People with developmental disabilities often develop dementia at a younger age, and are more likely to develop it than those who do not have a developmental disability. They are often diagnosed late, too, due to “diagnostic overshadowing”, where changes in behaviour are attributed to their disability rather than dementia.

Previous research has found that people with developmental disabilities will often choose food over activities when a choice between the two is offered (the opposite of people with dementia). However, no one has yet looked at whether this preference shifts when people with developmental disabilities develop dementia. If we know how preferences change, we can ensure that care settings tailor their support.

We all value having choices, and our work is focused on evaluating and developing ways to ensure that people with dementia and developmental disabilities continue to be offered choices, even in the smallest of ways.The Conversation

Rebecca Sharp, Senior Lecturer in Psychology, Bangor University and Zoe Lucock, PhD Researcher, Bangor University

This article is republished from The Conversation under a Creative Commons license. Read the original article.

Stressed and exhausted caregivers need better support

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Up to 80 per cent of community care for older adults is provided by unpaid informal caregivers. In the absence of government supports, many of them struggle with exhaustion, stress and depression.
(Shutterstock)

Jenny Ploeg, McMaster University and Maureen Markle-Reid, McMaster University

When Brenda retired from paid work, it was like a care-giving tsunami.

Her dad and stepmom moved in with her, her husband had a heart attack and she became a grandma — all within six months.

Brenda is one of 8.1 million Canadians who have taken on challenging unpaid roles — as informal caregivers for people living with physical or cognitive conditions or chronic life-limiting illnesses.

Her stress increased as her parents started to deteriorate physically and mentally. She tried to stay ahead of the ever-changing situation, but became exhausted after her dad started waking in the middle of the night and getting dressed to go out.

She looked on the internet for support in her care-giving role.

As co-scientific directors of the Aging, Community and Health Research Unit at McMaster University, we are working together with older adults with multiple conditions and caregivers like Brenda to promote optimal aging at home.

Our research shows that current health and social services do not address the complex needs of older adults or their family caregivers.

It also suggests that web-based interventions may help reduce depressive symptoms, anxiety and stress or distress for these caregivers.

Who cares for the caregivers?

Older adults with chronic conditions rely heavily on their family caregivers to coordinate their care, monitor medication and accompany them to appointments.

In fact, 70 to 80 per cent of community care for older adults is provided by informal caregivers as opposed to formal care providers.

Increasingly, these older adults have multiple chronic conditions (MCC), such as dementia and stroke, not just one. And as this prevalence of multiple conditions increases worldwide, it’s associated with poor health and higher health-care use and costs.

Women represent a slight majority of Canadian caregivers at 54 per cent and spend more time per week on caregiving than males.

Caregivers report that they do not receive adequate home care or respite services to support them in their roles. There are, for instance, long wait lists for long-term care beds.

Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.
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While caregiving is rewarding, many informal caregivers experience stress and anxiety leading to their own poor mental and physical health.

Informal caregivers feel overwhelmed with multiple requests for their time and frustrated when they can’t plan too far in advance.

“I felt like I was spending a lot of time waiting. Waiting for people to get ready. Waiting for people to get back to me. Waiting at appointments,” said Brenda.

Some reach a crisis point and leave their loved ones in the hospital emergency room because they are unable to continue in their caregiving role. This contributes to an already overburdened acute-care system.

Web-based supports can help

We conducted a systematic review and meta-analysis that examined the impact of different types of internet-based interventions on caregiver mental health outcomes.

One example of such a web-based support is My Tools 4 Care, developed by our colleague Dr. Wendy Duggleby at the University of Alberta and her team.

We found evidence that internet-based interventions had a positive effect on reducing depressive symptoms, stress, distress and anxiety in caregivers of adults with a chronic condition.

Internet-based interventions reduce caregiver depression and anxiety.
(Shutterstock)

The most effective category of online support was information and/or education with or without professional psychological support. Information provided together with combined peer and professional psychological support was also effective, to a lesser extent.

However, although many websites for caregivers provide valuable information, we found that they need to be easier to navigate and use.

Caregivers in our study made recommendations to improve the content and format of online resources. Suggestions included: Providing personalized information about local resources; sharing practical caregiving tips and strategies; creating opportunities to connect online with other caregivers; and having user-friendly features that are easy to navigate.

Nova Scotia leads the way

Caregiving comes with costs to the caregivers — to their health and to their finances.

Half of caregivers are between 45-65 years of age, in the peak of their earning years. They often take time off work to take their loved ones to appointments, and some must leave work early when the health of their loved one worsens. Out-of-pocket expenses for equipment, medications and parking can also be expensive.

Research shows that caregivers spent $12.6 million in one year on expenses related to their roles.

Nova Scotia is the only province in Canada that has a monthly income or allowance for caregivers, known as the Caregiver Benefit Program. Financial assistance from the government for caregivers in other parts of Canada mainly take the form of federal tax credits and insurance benefits.

And yet caregivers make vitally important but often unrecognized contributions to our society. It is estimated that they contribute $25 billion in unpaid labour.

Change is urgently needed to better support our caregivers.The Conversation

Jenny Ploeg, Professor, School of Nursing, McMaster University and Maureen Markle-Reid, Associate Professor and Canada Research Chair in Person Centred Interventions for Older Adults with Multimorbidity and their Caregivers, School of Nursing, McMaster University

This article was originally published on The Conversation. Read the original article.

8 Residents in a care home and it costs no more than a regular care home in Switzerland

8 Residents in a care home and it costs no more than a regular care home in Switzerland. Watch the videos to find out more. Please note that in the first video the language does not adhere to dementia language guidelines.