Planning to Live Well March 16 th 2016 . Dorothy Kamaker RN MN - - PDF document

Dorothy Kamaker RN MN Independent Patient Advocate

Alzheimer’s Dementia Planning to Live Well

March 16th 2016.

Getting smart = getting a diagnosis (for you or someone you care for)

• Be assertive with your doctor
• <50% of people with Alzheimer’s get a diagnosis

within 12 months of symptom onset.

• Insist on testing
• Testing from a neuropsychologist establishes the

exact problem, the stage of the disease, what skills remain and what do not, how to learn important new skills, degree of medical/legal capacity, access to training

• Get onboard with the Alzheimer’s Association Australia

(www.fightdementia.org)

• Counselling
• Resources
• Information

www.alzheimersassistsydney.com 0421011430

Alzheimer’s & the emotional roller coaster

www.alzheimersassistsydney.com 0421011430

• Anger. Your life is taking a different course than the one you and your

family had planned. You cannot control the course of the disease.

• Relief. The changes you were experiencing were cause for concern. A

diagnosis validated these concerns by assigning a name to your symptoms.

• Denial. The diagnosis seems impossible to believe. You may feel
• verwhelmed by how your life will change as a result of Alzheimer's.
• Depression. You may feel sad or hopeless about the way your life is

changing.

• Resentment. You may be asking yourself what you did to deserve your

diagnosis or why this is happening to you and not someone else.

• Fear. You may be fearful of the future and how your family will be

affected.

• Isolation. You may feel as if no one understands what you're going

through or lose interest in maintaining relationships with others. Sense of loss. It may be difficult to accept changes in your abilities.

• Anxiety. You may be anxious about the diagnosis or before that, why

you are experiencing changes.

Sharing Your Diagnosis

(Help others to support you)

Why tell others about your diagnosis?

• Recruits support, diminishes stigma/discomfort, reduces stress, shows

acceptance/trust Deciding who to tell

• Who are the people I feel closest to?
• Who will continue to support me with this diagnosis?
• Who I am responsible for telling (spouse, partner, friends)?

How to share your diagnosis

• To increase the likelihood of a comforting reaction when you tell your

friends or family about the diagnosis, find a time when you can be alone and relaxed together. Give some thought to the conversation — what do you want to say? Consider writing your thoughts on paper and bringing that with you. www.alzheimersassistsydney.com 0421011430

Sharing Your Diagnosis (Help others to support you cont’d)

Responses to diagnosis

• Just like you, the people with whom you share your diagnosis

will likely experience similar reactions including fear, anger or relief that there is an explanation for symptoms.

• You may encounter unexpected or negative reactions
• . Family and friends may react with denial, or with comments or

behaviour that reflects their own fears, discomfort or misconceptions about Alzheimer's disease. BE PREPARED, BE UNDERSTANDING, BE STRONG ACCEPT HELP www.alzheimersassistsydney.com 0421011430

PLANNING TO LIVE WELL WITH ALZHEIMER’S

Research is clear that the best outcomes for Alzheimer’s Clients are associated with early interventions and planning. There is no standard or typical journey for people living with dementia and the diagnosis and referral pathway differs greatly between individuals. Dementia is characterised by a decline in the ability to make important legal, financial, social, residential and end of life decisions. Without a plan there is increased stress and loss of control not only for the patient but their families as well. NO PLAN IS THE WORST PLAN NO PLAN = CRISIS MANAGEMENT www.alzheimersassistsydney.com 0421011430

Legal Planning

Legal planning should include:

• Taking inventory of existing legal documents, reviewing and making

necessary updates. TELL SOMEONE WHERE DOCUMENTS ARE.

• Making a will. Making sure it is up to date.
• Making legal plans for finances and property
• Putting plans in place for enacting your future health care and long-

term care preferences (Guardianship ENDURING, end of life wishes)

• Naming another person to make decisions on your behalf when you no

longer can (power of attorney ENDURING) www.alzheimersassistsydney.com 0421011430

Financial Planning

• Use a Financial and Legal Document Worksheet

This will assist you in organizing needed documents and taking an inventory of all assets and debts you and your partner are responsible for.

• Identify family members that should be included in your financial plans.

For example, those with knowledge of your situation and those you may be able to provide support.

• Try to explore foreseeable costs

Consider the costs you may incur now and in the future. Remember there is a large lump sum required to access residential care facilities.

• Review government benefits.

You may be eligible for benefits that provide assistance with prescription costs, transportation and meals. GET AN ACAT ASSESSMENT EARLY.

• Decide who can help you complete routine financial responsibilities.

This may include paying bills, arranging for benefit claims, making investment decisions, managing bank accounts and preparing tax returns. www.alzheimersassistsydney.com 0421011430

Building a Care Team

Your care team should include:

• Family members,

whether living with you or living across the country

• A close friend(s)
• Neighbours or
• thers who may

help with your day- to-day tasks

• Your general

practitioner, neurologist, counselor and/or

• ther specialist
• A volunteer from

a community

• rganization,

members of your church or other social group www.alzheimersassistsydney.com 0421011430

End-of-Life Planning

Questions to consider:

• In what type of environment do I want to spend the last stage of my

life? At home, in a nursing facility?

• What are my religious, spiritual or cultural beliefs about end of life?

How can these be respected and honoured?

• Do I want all available treatment measures to be taken? Are there

any treatments I do not want?

• DO I HAVE THESE WISHES CLEARLY AND LEGALLY

DOCUMENTED? www.alzheimersassistsydney.com 0421011430

Overcoming Stigma

Be open and direct. Call a spade a spade from the outset and people will soon learn not to patronise, pity, marginalise or avoid plain speaking with you. Communicate the facts. Sharing accurate information is key to dispelling misconceptions about the

• disease. Tell people what you know, what you can and cannot do, where to

find information and how to help you. Seek support and stay connected. It is important to stay engaged in meaningful relationships and activities. Whether family, friends or a support group, a network is critical. Start to participate in activities that can go the distance and can nurture you. Don't be discouraged. Denial of the disease by others is not a reflection of you. A thick skin helps. www.alzheimersassistsydney.com 0421011430

Living well With Alzheimer’s

There is no cure for Alzheimer’s Dementia but many of the symptoms can be successfully managed and many of the implications can be controlled by careful planning and strong advocacy. You have a choice in how you live your life with Alzheimer's or other dementia. Avoid becoming a “sufferer” or a “patient”. You are a person with a condition to be dealt with. It is possible to live well with Alzheimer's by taking control of your health and wellness, and focusing your energy on the aspects of your life you find most meaningful.