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AAAs/TITLE VI AGENCIES

AAAs/TITLE VI AGENCIES Last Updated: September 7, 2012

    Alaska

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    • CNMI Office of Aging – Saipan, MP

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    Wyoming

    • Eastern Shoshone Tribe – Fort Washakie, WY
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    • Wind River Nutrition and Transportation – Fort Washakie, WY

    fear of retaliation in skilled nursing facilities

    NORC - National Long-Term Care Ombudsman Resource Center. :: Connecticut Video: Voices Speak Out Against Retaliation
    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


    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.
    --
    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.

    Top tips for carers - Alzheimer's Society UK

    Top tips for carers - Alzheimer's Society
    Top tips for carers
    Man smiling with woman
    When your loved one is being cared for in hospital

    There are many things you can do to check your loved one is receiving good care in hospital. Working with the care home is the best place to start.

    We have put together our ten top tips for carers whose loved one are now being cared for in a care home/hospital:

    Helping the person with financial issues | moneymatters article by Alzheimer s Association,

    © 2010 Alzheimer s Association. All rights reserved. This is a  official publication of the Alzheimer s Association but may be distributed by unaffiliated organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer s Association.

    Helping the person with dementia settle financial issues Putting financial plans in place is important for everyone, but understanding money matters is especially vital for the person with dementia.

    Dementia is a general term for the loss of memory, decision-making and other intellectual abilities serious enough to interfere with daily life. Alzheimer’s disease is the most common form of dementia.

    Once a person is diagnosed, family and friends should help the person make financial plans.The sooner plans can begin, the more the person with dementia may be able to participate.

    The Alzheimer’s Association has identified costs you may face as your loved one lives
    with dementia. Inside, you’ll also find different ways to help cover those costs.

    1 Getting started Gather financial and legal documents Discuss financial needs and goals
    Get professional assistance Look at factors that affect income Costs you may
    face

    How to cover the costs Insurance Work-related and personal resources Government assistance Financial help that you provide Support services in your community

    Money matters is meant to provide general financial information, not to take the place of professional financial or legal advice. New developments – such as legislative and regulatory changes – may affect its accuracy. Consult a professional before making decisions.

    Getting started

    Begin putting financial plans in place as soon as the diagnosis has been made. Careful planning can help you secure a healthy financial future.

    In addition to planning for the cost of care, there are many ongoing financial duties, including:
    • Paying bills
    • Arranging for benefit claims
    • Making investment decisions
    • Preparing tax returns

    Get started by putting in place all of the information, resources and support you’ll need.

    Gather financial and legal documents

    Carefully go over all financial and legal documents, even if you’re already familiar with them.

    Legal documents include:

    • Living wills
    • Medical and durable powers of attorney
    • Wills Financial documents
    include:
    • Bank and brokerage account information
    • Deeds, mortgage papers or ownership
    statements
    • Insurance policies
    • Monthly or outstanding bills
    • Pension and other
    retirement benefit summaries
    • Rental income paperwork
    • Social Security payment
    information
    • Stock and bond certificates
    At this point, it may also be helpful to
    identify which necessary documents are not in place.

    Professional financial and legal advisers can assist you with this task.
    Discuss financial needs and goals

    After the diagnosis, determine financial needs and goals. Discussing these early on
    enables the person to still understand the issues and to talk about what his or her
    wishes are.

    Involve all other people concerned as much as possible. Talk about putting financial and care plans in place. If others are available to help, encourage the sharing of caregiving duties. Discuss how finances might be pooled to provide necessary care.

    Get professional assistance

    Now is also a good time to find the professionals you will need. They will be valuable sources of information and assistance.

    Start by contacting your local Alzheimer’s Association office. Our staff can match you with the right professional services, including qualified attorneys, financial planners and accountants.

    Financial advisers

    Professional financial advisers, such as financial planners and estate planning
    attorneys, can help you:

    • Identify potential financial resources • Identify tax deductions • Avoid bad
    investment decisions that could deplete your finances

    When selecting a financial adviser, check qualifications such as:

    • Professional credentials
    • Work experience
    • Educational background
    • Membership in professional associations
    • Areas of specialty Also, ask the financial adviser if he or she is familiar with elder care or long-term care planning.

    Legal advisers

    Seek an experienced elder law attorney to help:

    • Address estate planning issues • Prepare legal documents If you cannot afford legal
    assistance, find out if pro bono (no cost) legal aid is available in your community.

    Look at factors that affect income

    When making financial plans for the person with dementia, be sure to consider his or her:

    • Age
    • Types of assets
    • Types of insurance
    • Tax issues • Long-term health outlook

    Costs you may face

    Begin planning a long-term budget now. Consider all the costs you might face, now and in the future.

    Keep in mind that Alzheimer’s is a progressive disease, and the person’s needs will
    change over time.

    Costs may include:

    • Ongoing medical treatment for Alzheimer’s, including diagnosis and follow-up visits

    • Treatment for other medical conditions
    • Prescription drugs • Personal care supplies •
    Adult day care services
    • In-home care services
    • Full-time residential care services

    These costs vary depending upon where you live.

    To learn about care options in your area, contact your local Alzheimer's Association office or visit the Alzheimer's Association CareSource™ at www.alz.org/caresource.There you’ll find a set of online tools and services that will help you coordinate and plan to pay for care. A financial adviser can help design a plan that’s unique to the person’s financial needs – both immediate and long-term.

    How to cover the costs A number of financial resources may be available to help cover the costs throughout the course of the disease. Some may apply now, others in the future.

    Insurance

    Health-care coverage

    If you are 65 or older, the primary source of health care coverage is usually Medicare.

    However, private insurance, a group employee plan or retiree health coverage may also be in effect. No matter what the age of the person with dementia, it’s vital to keep active any existing health care plans that meet his or her needs.

    Medicare covers inpatient hospital care and some of the doctors’ fees and other medical items for people with Alzheimer’s who are age 65 or older. Medicare also covers outpatient prescription drugs.


    If the person with dementia is younger than 65, Medicare can provide coverage if he or she has been on Social Security disability for at least 24 months.

    Medicare provides some home health care, including skilled nursing care and
    rehabilitation therapy, under certain conditions.

    Custodial long-term nursing home care is not covered by Medicare. Medicare will only pay for up to 100 days of skilled nursing home care under limited circumstances.
    Medicare will pay for home or inpatient hospice care for qualified people who are terminally ill.

    You may be able to choose a “managed care” form of Medicare, such as:
    • Medicare health maintenance organization (HMO)
    • Preferred provider organization (PPO)
    • Point of service (POS) plan

    These options may provide services not covered by traditional Medicare. But these forms of Medicare usually have limits on which hospitals,doctors and other health care providers you can use.

    To learn about the many Medicare options, and whether they are right for the person with dementia, read each plan carefully. You can also contact your State Health Insurance Assistance Program (SHIP) for free one-on-one help and publications. Call us at 1.800.272.3900, and ask for the SHIP location nearest you.

    You also may be able to supplement the person’s Medicare coverage with Medigap insurance, which fills gaps in Medicare coverage, such as paying for coinsurance.The more expensive Medigap policies may cover additional items.

    Learn more about Medicare Call 1.800.633.4227 Visit www.medicare.gov or find your state’s SHIP at www.medicare.gov/contacts/static/allStateContacts.asp If the person with dementia is younger than 65 years old (considered younger-onset Alzheimer’s), he or she may have private insurance, a group employee health plan or perhaps retiree medical coverage.

    If he or she changes policies, check how soon expenses from Alzheimer’s disease will be covered under the new policy.

    Most policies do not cover “pre-existing conditions” for up to a year. However, these exclusion periods (when coverage is not provided) don’t apply in all cases.

    The exclusion period won’t apply if the person:
    • Has been covered for the past 12 or 18 months, depending on the policy,
    • Has already met an exclusion period, and • Has not been without health coverage for more than 62 days

    COBRA may be another option for a person younger than age 65. COBRA stands for the Consolidated Omnibus Budget Reconciliation Act of 1985. COBRA applies to employers with 20 or more employees. Under COBRA, an employee may continue group plan coverage for up to 18, 29 or 36 months,depending on the circumstances, if he or she:
    • Leaves the employer
    • Has his or her hours reduced to the point that he or she nolonger qualifies for the health plan
    The insured employee must pay the full cost of coverage, plus up to 2 percent more to cover administrative costs. COBRA can be especially helpful until the person with dementia:
    • Gets new coverage through an employer, or
    • Becomes eligible for Medicare You must activate the COBRA option within 60 days of when the person with dementia leaves work or has work hours reduced. Some private health care plans will extend coverage under a disability extension of benefits. In other words, even though the medical plan may lapse, an insured’s disability (in this case, Alzheimer’s disease) remains covered.

    Disability insurance

    Disability insurance provides income for a worker who can no longer work due to illness or injury. With an employer-paid disability policy, 60 to 70 percent of a person’s gross (overall total) income is usually provided. Benefits paid out of an employer-paid plan are taxed as income.

    If the person with dementia bought a personal disability policy, then the benefits paid will be the amount he or she chose.The benefits from a personal disability policy are not taxed as income.

    Long-term care insurance

    If long-term care insurance is in place, carefully review the policy to find out:
    • Is Alzheimer’s disease covered? Most policies say they cover Alzheimer’s disease, but take a closer look to be sure.
    • When can the person with dementia begin to collect benefits? Most policies require a defined level of physical or cognitive impairment.
    • What is the daily benefit, and is it adjusted annually for inflation?
    • How long will benefits be paid?
    • Is there a maximum lifetime payout?
    • What kind of care will the policy cover? Examples include skilled nursing home, assisted living, custodial care and licensed home care.
    • How long after diagnosis will the policy begin to pay? This is often called the
    elimination period.
    • Are there tax implications for getting this money? Unfortunately, after symptoms of Alzheimer’s disease appear, it is usually no longer possible to purchase many types of insurance, like disability and long-term care insurance.

    Life insurance

    Life insurance can be a source of cash. You may be able to borrow from a life insurance policy’s cash value. Or the person with dementia may be able to receive a part of the policy’s face value as a loan. This is called a viatical loan and is paid off upon the person’s death.

    Some life insurance policies may offer accelerated death benefits. This means that some of the insurance benefits can be paid if the insured person is not expected to live beyond the next six to 12 months because of a terminal illness. The payout may run as high as 90 to 95 percent of the policy’s face value and will not be taxed as income. See if any policies contain a waiver of premium rider. That means that the insured,if disabled,does not have to pay premiums to continue coverage.

    Work-related and personal resources

    Employment

    In the early stages of dementia it’s often possible that a person will continue
    working. This may mean adapting job duties to fit the current level of ability.

    The Americans with Disabilities Act (ADA) offers limited protection to those with
    Alzheimer’s. The ADA requires that companies with at least 15 or more employees make “reasonable” accommodations for job applicants and employees with physical or mental disabilities. For example, an employer may switch the worker to a less demanding job or reduce work hours.

    Be sure the employer is educated about Alzheimer’s disease and its symptoms.

    If you think the person with dementia has been treated unfairly at work, first try to resolve the issue with the employer. If that doesn’t work, you can file a claim under the ADA through the federal Equal Employment Opportunity Commission or under your state’s disability law.

    Employee benefits

    If the person with dementia continues to work:
    • Review the employer’s benefits handbook. • Ask the benefits specialist what benefits may be available. For example, the employer may provide paid sick leave or other short-term disability benefits (usually for one year or less).
    • Keep written confirmation of all benefits. The employee may be able to convert an
    employer-provided life insurance policy to an individual plan. If the person with
    dementia is still working, he or she may have available a flexible spending account. This allows payment for out-of-pocket medical expenses with pretax dollars, for potential savings of about 20 to 30 percent.

    Retirement benefits

    Retirement plans include:
    • Individual retirement accounts (IRAs)
    • Annuities Benefits from retirement plans can
    provide critical financial resources, even if the person with dementia hasn’t reached retirement age.

    Pension plans typically pay benefits before retirement age to a worker defined as
    disabled under the plan’s guidelines.

    The person with dementia may also be able to withdraw money from his or her IRA or
    employee-funded retirement plan before age 59 1/2 without paying the typical 10 percent early withdrawal penalty. This money usually will be considered regular income, and taxes will have to be paid on the amount withdrawn.

    In that case, if withdrawals can be delayed until after the person leaves work, income taxes due will likely be less because he or she will probably fall into a lower income-tax bracket.

    Social Security benefits are also available before retirement age if Social Security disability requirements are met.

    Personal savings, investments and personal property

    Investment assets like these can be sources of income:
    • Stocks
    • Bonds
    • Savings accounts
    • Real estate
    • Personal property, such as jewelry or artwork For example, the equity in a home could be converted into income, a process called a reverse mortgage. This is a type of home equity loan that allows a person age 62 or older to convert some of the equity in his or her home into cash while remaining the homeowner. The amount the person is eligible to borrow is generally based on the:
    • Person’s age • Home’s equity • Lender’s interest rate Reverse mortgages do not have an impact on Social Security or Medicare benefits, but they may affect qualifying for other government programs.

    Government assistance

    In addition to Medicare, the person with dementia may qualify for a number of public programs. These programs provide income support or long-term care services to people who are eligible.

    Social Security Disability Income (SSDI)

    A worker who is younger than age 65 may qualify for Social Security disability payments. To qualify for SSDI, the person must meet the Social Security Administration’s definition of disability. Meeting the definition of disability generally means proving that:

    • The person with dementia is unable to work in any occupation.
    • The condition will last at least a year or is expected to result in death. Family
    members also may be eligible to receive SSDI benefits. File for SSDI benefits as soon as possible:
    • Benefits do not begin until the sixth full month of disability.
    • The Social Security Administration often takes a long time to decide whether to
    approve a claim.
    • It’s not unusual for disability applicants to be rejected initially. Be prepared to appeal.Your professional advisers can assist in this process.

    After receiving SSDI benefits for at least 24 months, the person with dementia will
    qualify for Medicare benefits.

    Supplemental Security Income (SSI)

    SSI guarantees a minimum monthly income for people who:
    • Are age 65 or older, • Are disabled or blind, and • Have very limited income and
    assets – these asset and income levels vary from state to state To qualify for SSI
    benefits, the person with dementia must meet the Social Security Administration’s
    definition of disability.

    If you think he or she qualifies for SSI benefits, begin the application process as
    quickly as possible after the diagnosis. SSI payments begin upon approval of the
    application.

    Learn more about SSDI and SSI Call 1.800.772.1213 Visit www.ssa.gov

    Medicaid

    Medicaid is a program jointly funded by federal and state governments. It is
    administered by each state. Medicaid pays for:
    • Medical care for people with very low income and asset levels
    • Long-term care for people who have used up most of their own money, under most circumstances Most Medicaid dollars go toward nursing home care, but most states have home- and community-care options for some people who qualify for nursing home care. (Not all nursing homes accept Medicaid, so choices are limited.)

    In most states, Medicaid will pay for hospice care. If the person with dementia is
    eligible for SSI, he or she usually is automatically eligible for Medicaid.

    Those not on SSI must have minimal income and assets. The amount is determined by each state.

    There are also specific guidelines about protecting spouses from impoverishment (the depleting of finances) in determining income and asset levels. The person with dementia should be very careful about giving away assets to family members to qualify for Medicaid. Strict laws govern this area. Be sure you are fully aware of the legal and financial results of transferring property and wealth. Check with your legal adviser before you proceed.

    Learn more about Medicaid

    •Your state’s Medicaid telephone number may be listed in the blue (government) pages of the telephone directory
    • Call the general information telephone number for your state or county human services or social services department
    • Visit www.cms.hhs.gov/medicaid Veterans benefits Veterans
    may qualify for government benefits, including health and long-term care. These benefits often change, so call a Veterans Affairs benefits counselor or visit the VA Web site for the latest information. Learn more about veterans benefits Contact the Department of Veterans Affairs: Call 1.877.222.8387 for health care benefits Call 1.800.827.1000 for general benefits Visit www.va.gov

    Other public programs

    Many states have state-funded, long-term care, including: • Adult day care
    •Respite care
    Learn more about other public programs
    •LocalAlzheimer’sAssociationoffice
    •LocalAreaAgencyonAgingortheEldercareLocator: Call 1.800.677.1116
    Visit www.eldercare.gov Tax benefits Some financial benefits are available
    for the caregiver from the Internal Revenue Service (IRS): Income tax deductions
    • Income tax credits The person with dementia is likely considered your dependent for tax purposes. If so, you may be allowed to itemize his or her medical costs. Keep careful records of all medical expenses.

    You may be entitled to the Household and Dependent Care Credit if you need to pay someone to care for the person so you can work. This credit can be subtracted directly from the tax shown on your return. Learn more about tax issues
    •Alzheimer’sAssociationpublication, Taxes and Alzheimer’s disease, available from your local chapteroratwww.alz.org
    •Yourtaxadviser•InternalRevenueService(IRS): Call
    1.800.829.1040 Visit www.irs.gov

    Financial help that you provide

    You may choose to pay out of your own pocket for some or most of the care. Review your own resources, such as savings and insurance policies.

    Flexible spending account

    If the person with dementia is a dependent under the tax rules, you might be able to use your own workplace flexible spending account. This money can cover the person’s out-of-pocket medical costs or dependent care expenses in some cases.

    Family and Medical Leave Act

    If you work for an employer with 50 or more employees, you may be able to use the
    federal Family and Medical Leave Act (FMLA) to help balance your caregiving
    responsibilities.

    FMLA allows you to take off up to 12 weeks of unpaid leave each year to provide caregiving. Most workers are guaranteed to keep their jobs.

    Paid time off

    Some employers provided limited paid time off. You may be able to adjust your schedule or work fewer hours.

    In-home care

    If you hire a professional to work in your home to help with caregiving, you may be
    responsible for paying his or her Social Security and unemployment taxes. Ask your
    financial adviser to be sure.

    Support services in your community

    Many community organizations provide low-cost or even free services, including:
    • Respite care
    • Support groups
    • Transportation to social events
    • Meals delivered to the home Learn more about support services
    • Your local Alzheimer’s Association office
    • Eldercare Locator: Call 1.800.677.1116 Visit www.eldercare.gov
    • Your local religious organization •Hospital social worker or discharge
    planner

    Learn more about financial issues and planning by visiting your local Alzheimer's
    Association or one of the following resources:

    Alzheimer's Association CareSource™
    www.alz.org/caresource


    BenefitsCheckUp
    www.benefitscheckup.org

    Eldercare Locator
    www.eldercare.gov 1.800.677.1116

    Financial Planning Association
    www.fpanet.org 1.800.322.4237

    Internal Revenue Service
    www.irs.gov 1.800.829.1040

    National Academy of Elder Law Attorneys
    www.naela.com

    Money matters was developed from source material created in a collaboration with the
    National Endowment for Financial Education® (NEFE®).To learn more about the NEFE, visit
    www.nefe.org.


    10 quick tips Money matters

    1 Don’t put off talking about finances and future care wishes

    2 Organize and review important documents

    3 Get help from well qualified financial and legal advisers

    4 Estimate possible costs for the entire disease process

    5 Look at all of your insurance options

    6 Work-related salary/benefits and personal property should be considered as potential income

    7 Find out for which government programs you are eligible

    8 Learn about income tax breaks for which you may qualify

    9 Explore financial assistance you can personally provide

    10 Take advantage of low-cost and free community services

    The Alzheimer s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.

    For reliable information and support, contact the Alzheimer’s Association:
    1.800.272.3900 www.alz.org

    © 2010 Alzheimer s Association. All rights reserved. This is an official publication of the Alzheimer s Association but may be distributed by unaffiliated organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer s Association.