AAAs/TITLE VI AGENCIES

June 9, 2011

Prompted by a resident question at the 2005 VOICES Forum, Connecticut’s Long-Term Care Ombudsman Program (LTCOP) initiated a statewide work group and also commissioned the University of Connecticut Health Center to study fear of retaliation in skilled nursing facilities. That study concluded retaliation and the fear of retaliation is a reality in any supportive housing situation. Retaliation can be either egregious or subtle; many forms of retaliation may not even be recognized by residents or staff. Therefore, as one part of a comprehensive awareness initiative, LTCOP designed the Voices Speak Out Against Retaliation training video to acknowledge that fear of retaliation is a reality for individuals living in skill nursing facilities.

http://www.ct.gov/ltcop/cwp/view.asp?a=3821&q=475428 Video Voices Speak Out Against Retaliation - English

Unusual behaviour | same activity, same question repeatedly, Phone calls, 'perseveration

The information provided on this blog is for the benefit of people with dementia, carers, health and social care professionals and others with an interest in dementia. It provided by Alzheimer's Society UK © Copyright 1998-2011 All rights reserved
The Alzheimer's Society believes in the free dissemination of information as far as possible. However, proper credit and citations to the Alzheimer's Society should be included wherever the information appears. Original article http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=159

Unusual behaviour

As dementia develops, it can cause behaviour changes that can be confusing, irritating or difficult for others to deal with, leaving carers, partners and family members feeling stressed, irritable or helpless. By learning to understand the meaning behind the actions, it can be easier to stay calm and deal effectively with the challenges that arise. This factsheet outlines some typical sorts of unusual behaviour in people with dementia and explains some common causes.

Each person is an individual, with their own preferences and character traits. However, certain forms of behaviour are particularly common in people with dementia. If the person you are caring for has difficulty expressing him or herself in words, the unusual behaviour may become more extreme. By working out what each behaviour means, and finding ways to overcome the problem, the situation can become more manageable.

Common types of unusual behaviour

Repetitive behaviour

People with dementia often carry out the same activity, make the same gesture, or ask the same question repeatedly. Medical professionals sometimes call this 'perseveration'. This repetition may be because the person doesn't remember having done it previously, but it can also be for other reasons, such as boredom.

It is not unusual for a person with dementia to go through the motions of the activity they may previously have carried out at work. This can indicate a need to be occupied and to feel there is a purpose and structure to their life. Specific types of repetitive behaviour may include:

Asking the same question over and over again - As well as memory loss, this can be due to the person's feelings of insecurity or anxiety about their ability to cope. Try to be tactful and patient, and encourage them to find the answer for themselves. For example, if they keep asking the time, and you know they are able to understand the clock, suggest that they look at the clock themselves. It may help if you to move the clock to a position that is more visible. People with dementia may become anxious about future events such as a visitor arriving, which can lead to repeated questioning. It may help if you don't mention the event until just before it takes place.
Repetitive phrases or movements - This can be due to noisy or stressful surroundings, or boredom. Encourage the person to do something active, such as going for a walk. It can also be a sign of discomfort, so check that the person isn't too hot or cold, hungry, thirsty or constipated. Contact the GP if there is any possibility that the person may be ill or in pain, or experiencing a side-effect of medication.
Repetitive actions - Actions such as repeatedly packing and unpacking a bag, or rearranging the chairs in a room, may relate to a former activity such as travelling or entertaining friends. If so, this may serve as a basis for conversation. Alternatively, it could signify boredom or a need for more contact with people.
Repeatedly asking to go home - This may take place in residential care, or when the person is already at home. It can be a sign of anxiety, insecurity, fear or depression. The concept of 'home' might evoke memories of a time or place where the person felt comfortable or safe, or of a home, family and friends that no longer exist. If the person doesn't recognise their present environment as 'home', then it isn't home for them. Try to understand and acknowledge the person's feelings and reassure them that they are safe and loved.
Multiple phone calls - Some people with dementia phone their loved ones over and over again - particularly in the middle of the night. This can be very frustrating and distressing. The person with dementia may forget that they have already called, or may be insecure or anxious. If you are receiving repeated calls, it may help to get a phone with a number recognition display or an answerphone so you can decide whether you want to answer, and switch mobiles and ringers off at night. You may feel guilty about not answering every call, but it's important to look after yourself and get some rest.

Tips: Coping with unusual behaviour

Try to remember that the person you are caring for is not being deliberately difficult, their sense of reality may be very different to yours but very real to them. Dementia can affect a person's ability to use logic and reason so things that may seem obvious to you might appear to be very different for the person with dementia.
Ask yourself whether the behaviour is really a problem. If the behaviour is linked to a particular activity such as washing or dressing, ask yourself if this task really needs to be done right now or if you could leave it for a while until the person has calmed down.
Try to put yourself in the person's situation. Imagine how they might be feeling and what they might be trying to express.
Offer as much reassurance as you can.
Remember that all behaviour is a means of communication. If you can establish what the person is trying to communicate, you will resolve the problem much more quickly.
Distract the person with calming activities such as a hand massage, stroking a pet, a drive in the country or by playing their favourite music.
Try to make sure that you have support for yourself and breaks when you need them.
Some people find unusual behaviours, particularly a repetitive behaviour, very irritating. If you feel you can't contain your irritation, make an excuse to leave the room for a while.
If you find the person's behaviour really difficult to deal with, ask for advice from professionals or other carers before you become too stressed. Medication may sometimes be used for these behaviours, but this should be monitored and reviewed very carefully. Ask about the possible side-effects of any drugs so that if they appear you do not automatically assume that the dementia has become worse.
Remember that it is possible to be the cause of the behaviour through a lack of understanding of what the person is trying to communicate. Try stepping away from the situation, look at the person's body language and try to understand what they might be feeling at that time. Give the person space to calm down and offer reassurance.

articles and search engines for finding in-home care

http://alzheimers.boomja.com/In-Home-Care-for-Alzheimer%27s-Patients-277655.html

local chapter of the Alz Assoc:
http://www.alz.org/apps/findus.asp

Area Agency on Aging:
http://www.aoa.gov/AoARoot/AoA...s/find_agencies.aspx

Repetition Repetition Repetition Repetition Repetition Repetition Repetition Repetition

5ChallengingBehaviors.pdf

behaviors.pdf

http://alzheimers.about.com/od/caregiving/qt/repetition.htm

How to Manage Repetitive Behavior in Alzheimer's Disease From Carrie Hill, PhD,
As Alzheimer's disease progresses, your loved one might start repeating a sound, word, question, or action over and over again. While this is usually harmless, it can be extremely unnerving for caregivers

http://www9.georgetown.edu/faculty/friedmar/pdfs/Glosser%20Kohn%20Friedman%20Sands%20Grugan%20%281997%29.pd

Repetition

People with dementia may repeatedly say or do something over and over again. For example, they may repeat a word or question or pace back and forth. Suggestions: Try accepting the behavior if it causes no harm or redirecting it to a harmless or even useful activity if necessary.

Repeating the same words or phrases again and again
As the disease progressively impairs cognitive function, the person with dementia will increasingly have trouble communicating verbally and understanding what has been said.

Those who interact with the person may recognize some of the following changes:
Difficulty finding the right words
Repeating the same words or phrases again and again
Substituting words that sound similar
Inventing new words to describe familiar objects
Easily losing train of thought
Difficulty organizing words logically
Reverting to speaking in a native language
Using curse words (a strange quirk of diseases that sap language skills)
Speaking less often, or even not at all
Relying more on nonverbal gestures to compensate
Trouble understanding conversation, questions and instructions

The site offer tips for connecting with Alzheimer's patients whose neurodegenerative brain disease makes communication a constant struggle for them and a crucial challenge for caregivers.

http://www.mentalhelp.net/poc/view_doc.php?type=doc&id=15346
Tips for Dealing with Specific Dementia Problematic Behaviors
Carrie Hill, Ph.D. and Natalie Reiss, Ph.D

http://www.dhs.wisconsin.gov/aging/genage/changing.pdf

http://www.tn.gov/comaging/behavior.html
Repetitive speech or actions
Alzheimer's patient may repeat their words or actions. This requires patience on your part. Reminding them that they just said or did a certain thing does not help.
Sometimes ignoring the repetitions can help, as long as you've determined that there is no harm in doing so. Try using signs that have the time for meals written on them, or simple directions to the bathroom. Avoid discussing plans for an event too far in advance.

You will need to rule out any medical problems by discussing this symptom with the doctor

http://mmlearn.org/docs/ATG_Aug2011_Oakes_English.pdf

Alzheimer's Disease Glossary of Terms

http://www.caalz.org/PDF_files/Guideline-FullReport-CA.pdf

Hiring Private Duty Home Care Workers:

{original article By Rona S. Bartelstone}

Hiring Private Duty Home Care Workers:
Why Work through an Agency?
By Rona S. Bartelstone, LCSW, BCD, CMC

One of the greatest long-term needs of older adults and those with chronic illnesses is for in-home, custodial care services. These workers are often referred to as home health aides, certified nursing assistants and custodial care workers. These in-home workers make it possible for people with functional limitations to remain at home in a comfortable, familiar environment. Home health aides (as we will refer to this class of workers) provide a wide range of assistance with activities of daily living (ADLs), such as bathing, dressing, grooming, assisting with ambulation or transferring, toileting, feeding and providing medication reminders. In addition, home health aides help with what professionals call, instrumental activities of daily living (IADLs), such as shopping, meal preparation, making medical appointments, transportation, laundry and companionship.

"..... The biggest proportion of people who utilize home health aide services are those who need several hours per day of assistance, as opposed to those who need full-time care.

Due to the cost and the increasing shortage of home health aides, many families seeking to hire in-home staff turn to private individuals rather than working through an agency.

While at first glance this seems reasonable, it can also cause numerous problems and create unexpected liabilities for the family, who becomes the employer."

Tax Issues

caregivers training, & caregiver care | Free

caregivers training, videos website

CaregiversTrainingVideos.com is a free service website that specializes in giving family caregivers the learning tools necessary to succeed in caring for a loved one at home.

Some of the video topics are: How to use a gait belt, Fall Prevention, How to use a transfer board, Selecting a homecare agency, How to use a walker, Legal issues for seniors, Dementia care giving and much more.

CaregiversTrainingVideos.com hopes these instructional aids will assist you to care for your family member, friend or client. Our team of trainers has many years of experience in the medical field.

We pooled our knowledge, expertise, and invited guest speakers from various disciplines to bring you these instructional videos.

To strengthen our relationship and partnership between CaregiversTrainingVideos.com and the family home caregiver, we encourage comments and suggestions for additional topics. Therefore, please email us with your suggestions.

Learning a few Basics of AlzHeimer's Disease

confabulating "confabulating At its simplest, people who confabulate provide information, or act based on information, that is obviously false. These people are genuinely unaware that the information is wrong." ~ ALZcarer

Denial ? No: it is anosognosia
"A lack of awareness of impairment, not knowing that a deficit or illness exists, in memory or other function is called anosognosia. The term anosognosia refers to brain cell changes that lead to a lack of self-awareness. Many Alzheimer's patients appear to be in denial ... actually, they have anosognosia, and do not realize that they have problems."

Jennifer Ghent-Fuller's article, "Understanding the Dementia Experience": "Alzheimer Disease and other dementia's slowly steal all memories and abilities that have been learned since infancy - a process of progressive, permanent amnesia."

"All dementia's are characterized by progressive brain failure due to brain cell deterioration and brain cell death. All dementia's are fatal illnesses. As the brain deteriorates, the person's ability, understanding and behavior go through many changes. "

Jolene Brackey's book, "Creating Moments of Joy"" is great -- full of very practical, simple advice on how to make our loved ones feel loved, happy, and safe: So often it is difficult to find the ways a person with Alzheimer’s wants to be cared for because they lose the ability to communicate. The question to ask the children when the person cannot answer is, “How was love expressed in your family growing up?"

Naomi Feil's "validation therapy"

"Validation is a method of communicating with and helping disoriented very old people. It is a practical way of working that helps reduce stress, enhance dignity and increase happiness. Validation is built on an empathetic attitude and a holistic view of individuals. When one can "step into the shoes" of another human being and "see through their eyes," one can step into the world of disoriented very old people and understand the meaning of their sometimes bizarre behavior."

Alzheimer's...There IS hope.Alzheimer's care known as habilitation
A form of caregiving, championed by internationally recognized expert Joanne Koenig Coste, is significantly improving the lives of Alzheimer patients and their families. Since 1973 she has been advocating a compassionate and common sense approach to Alzheimer's care. Habilitation uses easy techniques to help people with the disease and their carepartners on the journey through Alzheimer's.

Healthcare Professionals!Learning to Speak Alzheimer's Guide to a complete in-service training program and LTSA Certificate of Completion

The Challenging Behaviour Foundation's At-a-glance guides for carers

View topic - The Challenging Behaviour Foundation's At-a-glance guides for carers | The Princess Royal Trust for Carers

Online support team at Wed Jun 29, 2011 2:34 pm
Hi everyone,

We thought some of you might be interested in this link to The Challenging Behaviour Foundation Website where there are three new ‘At a glance’ guides aimed at family carers supporting people whose behaviour is described as challenging. The guides have been developed in collaboration with the Social Care Institute for Excellence and there are separate guides for adults, teenagers and children. You can find out more information here:

http://www.challengingbehaviour.org.uk/ - there is a link in the New Resources section on the left-hand side to ‘Challenging behaviour at-a-glance’ where the guides can be found.

We hope some of you find this helpful :)

Online Support Team,
Carers.org

Eating and Drinking | ensure loved ones drink enough fluids, & maintain their weight

Eating and Drinking » Alzheimer's Compendium

Many caregivers become frustrated, trying to ensure that their loved ones drink enough fluids, and maintain their weight.

UK Care Quality Commission

Care Quality Commission

CQC

The independent regulator of health and social care in England.

We regulate care provided by the NHS, local authorities, private companies and voluntary organisations. We aim to make sure better care is provided for everyone - in hospitals, care homes and people's own homes. We also seek to protect the interests of people whose rights are restricted under the Mental Health A

Alzheimer Research Forum EADC

EADC

Alzheimer Research Forum is a nonprofit organization that seeks to advance Alzheimer’s disease research by improving scientists’ access to information and research resources. The forum maintains an extensive web-based metajournal of scientific research, discussion forums, resource indexes, grant/conferences/job opportunities, researcher, lab and institute profiles, and sponsors programs and workshops to address impediments to research.

Alzheimer Europe Organization website

Alzheimer Europe

Alzheimer Europe website. We are a non-governmental organisation aimed at raising awareness of all forms of dementia by creating a common European platform through co-ordination and co-operation between Alzheimer organisations throughout Europe. Alzheimer Europe is also a source of information on all aspects of dementia.

Maximizing communication with the Alzheimer's patient by Martin D. Shulman, Ellen Mandel

Maximizing communication with the Alzheimer's patient | Nursing Homes | Find Articles at BNET

"Those who interact with individuals with a diagnosis of dementia of the Alzheimer's type know the difficulties in communicating with these patients. Their communicative deficits have been well documented and may include poor memory, poor judgement, poor word finding skills, poor comprehension of spoken and written material, poor expressive language skills, verbal perseverations of words and ideas, poor topic maintenance, poor turn taking, poor discourse skills, and general disorientation or confusion. While these patients may be able to speak clearly, they have difficulty in communicating their thoughts, needs and ideas."

"While certainly devastating to the individual, these deficits can have an equally negative impact on the communication partner. Anyone who needs to converse with an Alzheimer's patient faces a variety of potential difficulties which may set the stage for communicative breakdown and frustration. The authors have been involved in training programs designed to maximize communicating with the Alzheimer's patient. It is our feeling that family, friends, physicians, nurses, aides, orderlies, volunteers, and staff members of long-term care facilities can learn some strategies to make conversing with Alzheimer's patients more effective, efficient and, hopefully, less frustrating."

Alzheimer’s Drugs — Fact and Fiction | Alzheimer's Compendium

There are two main categories of drugs for treating Alzheimer’s, i.e.:

These drugs do not cure Alzheimer’s, and there is scant evidence that they slow down the damage that is being done. What they can do, however, is help the damaged regions of the brain function better, which in turn slows down the emergence of symptoms and improves your loved one’s quality of life.

(1) Cholinesterase inhibitors
These include the prescription drugs Aricept/donepezil, Razadyne/galantamine, and Exelon/rivastigmine, and the over-the-counter “supplement” huperzine A.

(2) NMDA antagonists
So far, there is only one drug in this category, i.e., Namenda/memantine.

Alzheimer’s Drugs — Fact and Fiction » Alzheimer's Compendium

Alzheimer’s is a multidomain disorder

Confabulation: Honest Lying » Alzheimer's Compendium

Alzheimer’s is a multidomain disorder, including not only memory loss, but also executive dysfunction (e.g., impaired ability to plan ahead, prioritize, stop and start activities, shift from one activity to another activity, and to monitor one’s own behavior) and varying degrees of visuospatial and language deficits.

What is a Carers; Centre? | Carers in UK

Carers' Centres are independent charities that deliver a wide range of local support services to meet the needs of carers in their own communities.

All Carers' Centres provide, either by telephone, drop-in or outreach surgeries, the following core services: Information and advice - about all issues affecting carers, including benefits, breaks, respite and support services, carer assessment procedures, aids and adaptations Emotional support - by providing opportunities for carers to talk through their concerns, both individually and in group sessions, with staff, trained volunteers and other carers who understand their situation, thus helping to alleviate isolation and stress.

Community consultation - carers need a unified voice in any locality to ensure that they have an impact on decision-making.
By working with other agencies and consulting carers, Carers' Centres can have a strong influence on local policy, planning procedures and outcomes. They can also ensure that the local carers' voice can be linked in to the regional and national decision-making bodies.

Carers' Centres develop other services in response to identified local needs.
These might include: Advocacy - at tribunals, assessments, case reviews, assistance to access funds and services, or whenever a carer needs a friend or supporter Practical help - befriending, breaks, transport, benefits advice Training and education - in skills often needed by carers, such as moving and handling, first aid, and care giving; personal development; stress reduction through reflexology and aromatherapy; and training and education for professionals on carer-related issues Fun - time out, breaks, the opportunity to enjoy a social life, taking into account carers' special needs and sense of isolation The aim of our work is to help ensure that no carer has to reach crisis point before they get the support they need. In short, to make it easier for carers to cope.
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The Princess Royal Trust for Carers works to reach carers and develop services for carers across the country through The Nationwide Network of 144 Carers' Centres.

Caregiver Resource Directory: Online Version from Net of care

Caregiver Resource Directory (Online Version) - NetofCare

The Caregiver Resource Directory is a practical guide that includes much of the information available on this site, while also offering a way to organize materials and information.

The Princess Royal Trust for Carers | UK

One in 10 people in the UK are carers - looking after a loved-one who is sick, disabled, suffering from a mental health problem or an addiction - some carers are as young as five years old. What carers have in common is the selflessness to put their family members needs before their own, but they face an on-going life of isolation, ill-health and poverty.

A lifeline for hundreds of thousands of carers across the UK.
http://www.carers.org/

For 20 years, The Princess Royal Trust for Carers has been fighting to provide carers with the support they so desperately need. The Trust understands that few of us plan to become carers, so when a caring role starts, every carer needs an expert to guide them through the maze of services, rules and entitlements. For a carer, this can make the difference between keeping and losing their job, or between staying healthy and collapsing under the stress.

At the heart of The Trust is a unique network of 144 independently-managed Carers' Centres, 89 young carers' services and interactive websites (www.carers.org and www.youngcarers.net) which deliver around the clock support to over 424,000 carers and approximately 25,000 young carers. Today we are the largest provider of carer support in the UK offering unique and innovative services.

--

Media clip:
BBC - BBC One Programmes - Lifeline, The Princess Royal Trust for Carers

E-learning: The Open Dementia Programme

SCIE e-learning: Fair Access to Care Services (FACS) 2010 training module

E-learning: The Open Dementia Programme

Published: 2009

The Open Dementia e-Learning Programme is aimed at anyone who comes into contact with someone with dementia and provides a general introduction to the disease and the experience of living with dementia. This programme is designed to be accessible to a wide audience and to make learning as enjoyable as possible and so allows users to fully interact with the content and includes video, audio and graphics to make the content come alive. In particular the programme includes a considerable amount of new video footage shot by both the Alzheimer’s Society and SCIE where people with dementia and their carers share their views and feelings on camera.

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Unusual behaviour

Common types of unusual behaviour

Repetitive behaviour

Tips: Coping with unusual behaviour

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