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Early

Onset

Dementia

Alberta

Foundation


TOPICS

- The Importance of Documentation
- Advanced Care Planning
- Reducing the Care Partner's Stress
- Self Care for the Care Partner

The Importance of Documentation

Documentation has been going on for many years in all types of professions. It is a very important tool to follow the progress of any disease state. Its purpose is to record details, specifications and events.

It doesn’t matter where the documentation begins but it has to be started and slowly built on so it is available when any crisis strikes. The information documented serves as a baseline with which changes in the person’s medical condition may be compared. Baseline data is very important to provide a trail of changes in a person’s condition, decisions about the person’s needs can be made and recorded, and continuity of care can be ensured.

It can be a journal, notebook or a file on the computer where the observations are recorded, changes are monitored, and important contacts are kept track of. Include specific behaviors which seem out of the ordinary and dates of incidents as they occur. Accurate documentation of patient's symptoms and observations will be helpful when you meet with physicians, respite care program coordinators or other long term care providers as well as private insurance and CPP Disability Administration reviewing the disability forms.

It can be helpful to photocopy this information and share with other key family members. It will provide someone else with a care partner’s plan to follow if they fill in for you.If this document were not created, would you remember everything?

The Documentation should include some of the following;

• Name

• Diagnosis date

• Date (when you first noticed symptoms)

• Family

• Date Written

• Other physical and sensory impairments – ie: eyesight, hearing, diabetes, high blood pressure etc.

In order to document a change in abilities that interferes with everyday function, it is necessary to have a baseline for comparison. When complete, the Personal Profile will provide a word picture or baseline profile about the person and his/her Functional Abilities which were typical of behavior prior to the time of the diagnosis of dementia or disturbing behavioral changes.

Personal Profile

This Personal Profile is designed to describe a person when the person was not ill. Not everyone will experience changes in all areas. The order of the categories does not necessarily reflect the progression of the disease.

• Person’s Employer

• Name Telephone Number

• Date person stopped working (if applicable)

• Social Security Number

• Date of Birth

Examples of Possible Changes in Function- Loss of Abilities

Memory impairment

a) Inability to remember important information (an event. meeting, trip, child or grandchild). More than occasional forgetfulness.

b) Inability to remember recall well-learned information and/or inability to learn new information (how to operate a familiar machine - using a telephone).

c) Repetitive movements or persistence in statements or questions (tapping, folding, hand-wringing or saying a phrase over and over).

Disorientation to time

a) Dressing inappropriately for the season or weather (heavy coat in very hot summer).

b) Missing important appointments or deadlines.

Disorientation to place

a) Getting lost in familiar surroundings (losing the way home from the workplace which has been the same for many years, possible unexplained absences where person has difficulty finding directions from one place to another).

b) Inability to orient in unfamiliar place (finding the bathroom).

Impairment of judgment

a) A change in decision making ability (poor household decisions or business/ financial decisions).

b) Difficulty in concentration.

c) Inappropriate judgment (calling police for unwarranted suspicions).

d) Inappropriate control of impulses (exhibitionism, sexually inappropriate remarks or actions.

e) Change in toileting habits such as urinating on street, marked change in buying or saving habits).

Language impairment

a) Change in ability to communicate effectively.

b) Marked change in vocabulary (soft-spoken words to harsh profanity).

c) Change in language skills (a lot of searching for words, particularly nouns).

d) Conversations which are incomprehensible, irrelevant or where person loses train of thought.

e) Person has difficulty understanding what is said, may become argumentative or perhaps combative.

f) Person tends to repeat the same words or phrases.

Decline in capabilities and routine activities of daily living

a) Change in eating or dietary habits (dramatic change - more or less - in preference for sweets, salty foods or condiments).

b) Changes in sleep patterns.

c) Significant change in the way person dresses or grooms (not bathing).

d) Regressive change in table manners (using fingers or eating directly from serving bowls).

e) Marked change in reading habits (not reading newspaper).

f) Marked change in writing abilities (the mechanics of writing evidenced in check book from one year to another - name not signed in designated area).

g) Changes in ability to do simple perceptual tasks (unlock door or familiar tasks such as paying bills, evidenced in non-payment or duplicate payment of bills which were usually paid on time).

h) Loss of measured intellectual ability (evidenced from former records; school, employment testing, films, artwork or written material. Change in personality and/or marked difficulty maintaining social function.

i) Marked change or difference in interests and activities.

Change in personality and/or marked difficulty maintaining social function

a) Noticeable personality change (confident to indecisive. extroverted to withdrawn, accommodating to demanding or vice versa).

b) Difficulty in maintaining friends and former social relationships.

c) Increased dependency (independent to clingy).

Changes in expressions of feelings

a) Withdrawal or disassociation from activities and/or situations.

b) Inappropriate or unwarranted anger, frequent crying in one who never or rarely cried.

c) Dramatic mood swings from happy to sad, stubborn or docile or vice versa.

Thinking disturbances

a) Unwarranted suspiciousness (thinking food is poisoned or that people are stealing things).

b) Seeing, hearing and touching things and/or people that are not there, imaginary friends or enemies (in mirror or TV).

c) Imaginary powers such as invincibleness.

Job performance

a) Marked change in vocational interest.

b) Missed deadlines or appointments.

c) Reduced efficiency on the job.

d) Catastrophic reactions to problem situations.

Other influences

a) Marked change in acceptance of physical limitations.

b) Drug or alcohol abuse. Marked changes because of other illness.

Prepared by:Jody McCoppen - October 2016


Advance Care Planning

Planning ahead is the smart thing to do. Every Albertan who is 18 years of age or older should have:

• An enduring power of attorney

• A personal directive

• A will

These 3 important documents can be drawn up by a lawyer when a person is capable of making their own decisions.

An enduring power of attorney (POA) is written at a time when a person is capable of making their own decisions. It’s a legal document that allows a person to choose someone, usually a family member or trusted friend, to make financial decisions on their behalf when that person is unable to. Two medical practitioners must sign a Declaration of Incapacity form for the power of attorney to be activated. There isn’t one official form. Hospitals, doctors and care facilities may have their own form.

Depending on how the enduring power of attorney is written, there are two options:

• The person and the appointed person have control over the money – both can write cheques, sign documents, etc. If, in the future, the person can’t make decisions because of an illness or injury, the appointed person takes over making all the decisions.

• The appointed person starts making decisions immediately. A Declaration of Incapacity form must be signed for the power of attorney to be activated.

Advance Care Planning helps a person think about, talk about and document wishes for health care in the event that the person becomes incapable of consenting to or refusing treatment or other care. A person may never need the advance care plan - but should the person require it the plan will be there to make sure that their voice is heard when the person cannot speak for themselves.

Advance care planning is an ongoing process as a person’s health and situation changes. It is a process that can assist a person in making healthcare decisions now and for the future. Take the time to fill out the personal directive, and outline treatments the person may wish or refuse to accept while the person is capable of making their own decisions.

A personal directive is a legal document that allows a person to name someone trusted, to make medical decisions on behalf of that person if they are unable to. List the areas in which the designated person has decision-making authority (e.g. health care, residential issues). If there is a time when a person is unable to speak for themselves, it is important that the designated person and the healthcare team understand the person’s wishes for health care. Planning today can ensure that the wishes are known, no matter what the future holds.

It is helpful to think about goals regarding prolonging life and quality of life. Think about the person’s independence, or being cared for in the person’s own home or care centre. It’s important to start talking about these wishes now, before there is a health crisis.

Advance Care Planning may bring comfort and peace of mind to the person, their family, and to those who may have to make healthcare decisions on the person’s behalf. The following website may be accessed for personal directives or the person may have a legal one drawn up by a lawyer.

Personal Directive

Goals of Care Designations

The Goals of Care Designation is a medical order used to guide the healthcare team about the general aim or focus of a person’s care, including the preferred location of that care. Although advance care planning conversations don't always result in determining goal of care designation, they make sure the person’s voice is heard when the person cannot speak for them self.

The decisions are reached over time. They come about after conversations with the person and/or the designated person to make decisions on the person’s behalf, about health conditions and prognosis, the current and future treatment options, and the person’s wishes for healthcare in the future. A doctor or nurse practitioner will write the Goals of Care Designation as a medical order.

In a medical emergency this care plan guides the healthcare team to provide timely, medically appropriate treatment. It’s also an organized way for care teams to communicate about some parts of the person’s care as the person moves between locations of care. These plans are created just for the person and their situation. The plans can change if the situation changes or the person wants to change something that had been decided earlier.

These documents will be needed for future transitions and placement.

There Are Three Goals of Care:

Talk to the healthcare team about which Goal of Care best reflects the person’s health circumstances and wishes.

• Medical Care (M) – Medical tests and interventions are used to cure or manage an illness as well as possible, without the use of resuscitation or life support. This is appropriate when resuscitation and life support measures won’t work or when the person chooses not to have these treatments.

• Resuscitative Care (R) – The focus is to extend or preserve life using any medical or surgical means. This includes, if needed, resuscitation and admission to the intensive care unit.

• Comfort Care (C) – The focus of care is to provide comfort to ease a person’s symptoms without trying to control the underlying illness. This is for a person who has a life-limiting illness, when treatments can’t influence the course of the illness. This care can be given in any setting.

Green Sleeve

Green Sleeve is a plastic sleeve that holds advance care planning documents. When a person moves throughout the healthcare system, the Green Sleeve and documents go with the person so that healthcare providers always know about the decisions that have been made including the Goals of Care Designation.

The Goals of Care Designation medical order and care decisions are documented on Alberta Health Services’ forms. They are kept in the Green Sleeve that all healthcare teams in all areas of Alberta Health Services recognize. When a person is at home, the Green Sleeve should be kept on or near the fridge. This is where Emergency Response Teams will look for it. Any time a person goes to the hospital or to any healthcare provider, the Green Sleeve should always go with the person (remember to bring it home afterwards).

References:

Advance Care Planning Group, Alberta Health Services

Goals of Care Designations

www.humanservices.alberta.ca

Prepared by: Jody McCoppen - October 2016


Ways to Reduce The Care Partner's Stress

• Learn about the disease - Lack of information about the disease can add to stress of the care partner. It may be easier to accept changes in the person's personality and behaviour when the care partner recognizes that the changes can be attributed to changes in the brain associated with EOD.

• Be realistic about the disease. The care partner must have reasonable expectations about how much can be accomplished and what is important. There are no ‘right’ answers and the care partner may need to try different things before coming to terms with the diagnosis and how to best manage the situation.

• A care partner may go from feeling at ease to feeling tremendous anger at the disease, to feeling happy to sad, embarrassed, afraid or confused. This range of feelings is normal and most care partners experience them.

• Discussing the diagnosis with close friends and family gives insight to the challenges the care partner faces. The changes in intimacy related to the onset of the EOD are distressing to many couples. EOD may cause an increase in sexual activity or the opposite may occur and sexual desire dissipates. Changing roles from spouse to care partner may impact on emotional intimacy and physical desire.

The importance of activities in a person with dementia

• The balance of work and fun activities are essential to our physical and emotional well-being. The activities that a person does, defines who they are and determines their quality of life. It is natural to want to help, participate and succeed. A person with Dementia is no exception. Although activities do not slow the progression of Dementia, activities do improve quality of life for the person with Dementia. The biggest thing to remember for a person with Dementia is that they are still a ‘person’. The focus of the activity should not be about the activity itself, but the quality and enjoyment of the interaction that it brings. The person may not remember participating in the activity, but it is the enjoyment of the activity that will contribute to a person's overall sense of happiness and well-being, thus the well-being of the care partner and family as well.

• Activities are one of the most important aspects of the care of a person with dementia, but often the one that is most overlooked. Participating in activities can reduce the levels of depression, challenging behavior, falls and dependency. Many concerning behaviors may be a result of boredom or a lack of meaningful activities. Most people enjoy sitting and doing nothing for a few hours, but imagine the reality of doing nothing all day long. Unfortunately, this is often the case for a person with Dementia.

• Finding meaningful activities for a person with dementia can be very challenging. Activities must be suitable for the person's ability which will depend upon the progression of the disease. The care partner may need to encourage the participation of activities which will stimulate the senses, boost self-esteem and fulfill emotional needs.

• Daily living skills are also considered activities. Where possible, the care partner should encourage the person with Dementia to assist with daily living skills which may include helping to hold the tooth brush, washcloth, or choosing an outfit for the day. It could also include setting the table or clearing the table. Activities of daily living are just as important as a game of cards as they are fulfilling emotional needs.

• Not all activities need to be structured. Unstructured activities will help to improve social, emotional and spiritual well-being, and also help retain cognitive ability.

Giving the person with dementia some independence and making sure the person feels useful is a balancing act. Things are going to go wrong, take a breath, assess the situation and adjust. The care partner must become flexible.

Activities which can be part of a regular routine are very important to help with the structure of the day. Being allowed to carry on with everyday activities for as long as possible will help the person hold on to these skills and encourage independence. Being able to contribute and knowing that the help is valued gives a sense of purpose, satisfaction and wellbeing.

Participating in activities can help to prevent agitation, anxiety, frustration, boredom and challenging behaviours.

Advantages of being involved in activities

• Help the person maintain independence in and around the home

• Help maintain skills

• Improve self esteem

• Improve the quality of life for the person with dementia - and the care partner will also benefit

• Often compensates for lost abilities

• Allow the person to express feelings, through art, music, singing and dance

Bring pleasure to both the person and the care partner as they share these moments

How to plan activities

• Have a variety of activities organised that the person with dementia can do each day, e.g. Set the table, unload the dishwasher, looking at photos, folding clothes, dusting, making puzzles, gardening, walking, drawing, music or any other activities which is enjoyed. The care partner may need to give little more assistance with these activities but if it's enjoyable and calming then it's working. If a certain activity does not appeal one day suggest another activity to do instead. Think about what the person enjoyed doing in the past and plan activities which will involve some of those things provided the person can still do them.

• Plan tasks and activities which can be done together and also plan activities the person with dementia can do alone. This often ensures the person is less agitated and anxious and allows some time for the care partner too.

• It is usually better not to do anything which involves learning new tasks and skills - stick to what the person already knows.

• Younger people with dementia can still be very active. They may enjoy biking and walking, but lack of sense of direction can be a worry. These activities are better done with someone if the safety factor is too high.

• There are recreational centres and activities at the senior centers that could be of benefit in the early stages of dementia.

• Volunteering can be very rewarding for some people i.e. food banks, helping in senior centres, etc.

In Alberta there are various contacts for adult day programs:

• Family Community Support Services (FCSS) http://fcssaa.org

• Seniors directories i.e. Sage - Edmonton

• Home Care in my zone AHS - Home Care in my Zone

Home Care Program, Community Care Access - A needs assessment will be done to determine eligibility for publicly funded services.

• Alzheimer’s offices in your area www.alzheimer.ca/ab

• Alberta Health Services. Adult day support programs. Dementia advice is available through Health Link province-wide and can be accessed by dialing 811. This service helps support anyone living with dementia or anyone trying to handle a person with dementia.

• Family Services of Central Alberta (FSCA)www.fsca.ca

• Age Care Glenmore, Calgary agecare.ca

• InformAlberta.ca informalberta.ca

• Health Link Alberta Health - advice 24 hours a day 1.866.408.LINK (5465)albertahealthservices.ca

Self -Managed Care

Self-Managed Care (SMC) is a program in which a person eligible for Home Care, and/or their legal representative enter into a legal agreement with Alberta Health Services (AHS). This agreement provides a person with Home Care, resources to directly pay for and manage their personal care and home support services. The funding will be based on assessed unmet health care needs and will be re-assessed annually (or sooner if your health status changes).

Eligibility for Self- Managed Care in Alberta

• A person must be eligible to receive Home Care services in Alberta (e.g. valid Alberta Health Care Card and live in a community setting). A person eligible for Self-Managed Care is determined by an Alberta Health Services (AHS) case manager.

• Have assessed unmet health care needs

• Have stable health and predictable health care needs

• Have ongoing needs for personal care and home support services (e.g. longer term needs)

• Be willing and able to assume the responsibilities and risks associated with contracting services for their own personal or home support services. A legal representative may do this on behalf of a person.

It is the responsibility of the Agreement Holder to ensure that each employee is legally allowed to work in Canada. The Self- Managed Care program does not allow family members to be hired as paid care providers. Family is defined as: parents or grandparents, spouse (or partners living together in a spousal relationship), children (by birth or adoption), in-laws and other relatives living in the same household.

For more information on Home Care programs and services, contact your local Home Care Office. Family, friends, neighbours or health professionals can also call on behalf of a person.

North Zone: 1-855-371-4122

Edmonton Zone: 780-496-1300

Central Zone: 1-855-371-4122

Calgary Zone: 403-943-1920

South Zone: 1-866-388-6380

Self Managed Care Brochure

Based on the Home Care assessment the following services can be purchased with Self-Managed care funds.

Personal Care includes

• Assistance with personal hygiene, dressing, toileting, mobilization and transferring, eating, oral care and with medications

Home Support Services include:

• Services that meet the therapeutic and socialization needs of clients

• It may also support activities needed to live independently in the community, such as assistance with preparing meals, homemaking, and recreation activities.

Respite includes care such as:

• A break from caring duties, for primary care partner

Professional Services (e.g. nursing, social work, or physiotherapy) cannot be purchased with Self -Managed Care funds but will be arranged by the AHS Case Manager, based on the person`s assessed unmet needs.

Support

• Alberta Health Services www.albertahealthservices.ca

• Dementia advice is available through Health Link province-wide and can be accessed by dialing 811. This service helps support anyone living with or trying to handle someone who has dementia including those with Alzheimer’s disease. Also there is information and tips on their website myhealth.alberta.ca

• Home Care Program, Community Care Access 780-496-1300 - A needs assessment will be done to determine eligibility for publicly funded services.

• If a person is low income check with municipalities for any discounts for person with dementia and their care partners.

• Alberta Government website may provide assistance www.alberta.ca/alberta-supports

• Caregiver's Alberta What Program is best for You

• Care Partners cannot manage a person with dementia on their own. If a care partner is really overwhelmed they should speak with their doctor about a referral to a psychologist that specializes in dementia. A care partner should never feel they have to do it all on their own. This is the hardest job a care partner will ever have.

References:

Why Are Activities So Important

Assistance Dogs - alzheimers and dementia patients

www.fight dementia.org.au

www.verywell.com

www.albertahealthservices.ca

Prepared by: Jody McCoppen - Oct 2016


Self-Care for the Care Partner

Being a care partner for a person with chronic physical or cognitive conditions can be so overwhelming. The diagnosis of a debilitating disease or disabling health condition impacts every aspect of the care partner and the family’s daily life. As the person's cognitive, physical, functional abilities, personality and behaviour changes over a period of years, care partners face tests of strength, uncertainty, problem solving, and resiliency. The responsibility of being a care partner can put a person at increased risk for significant health problems including depression, anxiety, high levels of stress, or burnout. Seeking help and support along the way is not a luxury for care partners; it's a necessity.

Whether the care partner helps out full-time or just a few hours a week, it is hard work and can be a strain on the emotional, psychological, financial, and physical well-being of the person providing the care. Maintaining emotional and physical fitness is crucial, not just for the care partner but also for the person being cared for. The care partner should prepare themselves by learning about the disease. It may be easier for the care partner to accept changes in the person with dementia's personality and behaviour, when the care partner recognizes that the changes can be attributed to neurological changes associated with Early Onset Dementia. Understand the frustrations of the person with dementia and how the person feels, and seek support from others who can help the care partner succeed in their role for as long as possible. Support includes- information to aid in understanding, skills to assist in caring, respite to enable the care partner to par take in other activities, and financial support. Managing work and a family at the same time, is exhausting and difficult to keep on top of it all.

Just as each person with a debilitating disease progresses differently, so can the experience of the care partner. There are strategies that can help make the care partners journey as rewarding as it is challenging. Learn about the disease: Lack of information about the disease can add to a care partner's stress. Learning all about what is happening and what to expect along the way will not only help the person with dementia but is also the first step towards protecting the care partner's own mental and physical health. It is extremely important for the care partner to document the progression of the person's disease. It may seem like a subtle change at the time but it could be the beginning of a significant change. The documentation will be most helpful when talking to the doctors, healthcare team or respite care program managers.

Care Partners are often so concerned about the needs for the person with dementia that the care partner becomes overwhelmed and loses sight of their own well-being and neglect their own health. It’s important for the care partner to take steps to refresh themselves for their own health.

Caring for a person with Dementia can often seem to be a series of grief experiences as the person's memories disappear, skills erode, and behavioural changes sometimes become disturbing. For both care partners and the person with dementia these changes can produce an emotional turmoil of confusion, anger, and sadness.

As the disease progresses, the needs of the person with dementia will increase and the care partners responsibilities will become more challenging. For many though, a care partner's long journey includes not only challenges, but also many rich, life-affirming rewards.

A care partner needs to build skills such as using Emotional Intelligence. This is a set of emotional and social skills that influence the way a person perceives and expresses themselves, develop and maintain social relationships, cope with challenges, and use emotional information in practical and meaningful ways.

Learning to communicate is the key to help reduce stress for both the care partner and the person with dementia.

A care partner is not born knowing how to communicate with a person with dementia, but a care partner can learn. Improving communication skills will help make being a care partner less stressful and will likely improve the quality of the relationship with the person with dementia. Good communication skills will also enhance the ability to handle the difficult behavior encountered while caring for the person with a dementing illness.

Although these have been some ways to help reduce some stress for the care partner and the person with dementia, the care partner needs to learn to take care of themselves.

1. Set a positive mood for interaction - Attitude and body language communicate feelings and thoughts stronger than any words. Set a positive mood by speaking in a pleasant and respectful manner. Use facial expressions, tone of voice and physical touch to help convey the message and show feelings of affection.

2. Get the person’s attention. Limit distractions and noise by turning off the radio or TV, closing the curtains, shutting the door, or moving to quieter surroundings. Before speaking, make sure to have the person's attention; address the person by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep the person focused. If the person is seated, get down to the same level and maintain eye contact.

3. State messages clearly. Use simple words and sentences. Speak slowly, distinctly and in a reassuring tone. The care partner should refrain from raising their voice higher or louder; instead, the care partner should pitch their voice lower. If the person doesn’t understand the first time, use the same wording to repeat the message or question. If the person still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of (him, her, and them) or abbreviations.

4. Ask simple, answerable questions. Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices.

5. Listen with your ears, eyes and heart. Be patient in waiting for a response from the person with dementia. If the person struggles for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately.

6. Break down activities into a series of steps. This makes many tasks much more manageable. The care partner can encourage the person with dementia to do what they can, gently remind the person of steps that tend to be forgotten, and assist with steps that no longer can be accomplished on their own. Using visual cues, to show with a hand, can be very helpful.

Coping with stress and burnout while caring for a person with dementia

Everyone is different and refreshes themselves in different ways. Balancing the enormous task of caring for a cognitively-impaired person with other responsibilities requires skill, attention, and organization. By focusing on the needs of a cognitively impaired person, it’s easy for the care partner to neglect their own health. This will not only impact the care partner but also the person being cared for. If the care partner is not getting the physical and emotional support they need, they won’t be able to provide the best level of care. Soon the care partner will become overwhelmed which will lead to their own health issues. It’s important to plan a support network as early as possible. The most effective care partners can make reasonable, impartial judgments about both situations for the person with dementia and their own abilities.

No matter the day-to-day demands of caring for a person with dementia, it’s imperative for the care partner to take time daily for their own self-care.

Tips for self-care:

• Self-care - Self-care is about keeping the care partner strong. The care partner should seek professional help if they recognize they're exhibiting any warning signs of burnout. Visit the doctor for regular checkups and pay attention to the signs and symptoms of excessive stress. The care partner needs to take time away from caring for the person with dementia whether the care partner feels like they need a break or not. Schedule some personal time, organize it and stick to the schedule. The care partner needs to carefully guard any time they do manage to set aside. Learn to say no to unnecessary or unfulfilling activities. Maintain friendships, social contacts, and professional networks. The care partner needs to schedule frequent breaks throughout the day, take time out to pursue hobbies and interests, and stay on top of their own health needs.

• Seek regular respite care - Asking for help and excepting help is one of the hardest things for the care partner to do. Asking for help is the start of self-care. The care partner cannot do it all alone. It’s important to reach out for help with the daily tasks of being a care partner. When someone offers to help, let them. It is not being neglectful or disloyal to the person being cared for, and the care partner will not be judged. Care partners who take regular time away not only provide better care they also find more satisfaction in providing care. Ask other family members, friends, or members of your church for help with respite care to allow for the much needed break.

• Use community resources like respite care and adult day programs. They exist for the care partner's benefit. These services are invaluable for care partners who need to recharge their batteries. Respite Care provides temporary relief for Care Partners. Workers take over Care Partners responsibilities for a brief period of time, and care can be provided in the home. Adult Day programs provide social activities, therapies, education, and supervision in a group setting.

• Exercise - As a care partner exercise and proper nutrition is of upmost importance. Find a regular exercise partner, or someone to go for a daily walk with. Regular exercise not only keeps a care partner fit, it releases endorphins that can really boost the mood. Aim for at least 30 minutes of exercise on most days. If it’s difficult to get away for that long at once, break the time up into 10 minute sessions spaced throughout the day. Take a walk or jog outside, dance to your favorite music, work out to an exercise DVD, or cycle to the store. It will help maintain a person's strength and energy levels. Taking a group exercise class or working out with friends can give the much needed social outlet that the care partner requires.

• Learn how to manage stress - Being a care partner for a person with dementia can be one of the most stressful tasks that a care partner will undertake in a lifetime. To help deal with this stress, learn relaxation techniques such as deep breathing, meditation, rhythmic exercise, yoga or take mental vacations. (The care partner needs to picture themselves in the most remote, relaxing place imaginable. What are the sounds, the sights, the smells? ) These simple relaxation techniques can decrease anxiety about the future, help a person focus and boost their mood and energy levels.

• Share feelings - When someone asks, “What’s happening,” the care partner needs to take the opportunity to share their feelings. Talking about care partner problems isn’t complaining. Sometimes, family members assume that the care partner is doing just fine because they simply don’t know any better. Talk to a trusted friend, family member, clergy member, or therapist, about how you feel and what you’re going through. The person you talk to doesn’t have to be able to solve any problems they just have to be a good listener. The simple act of talking face-to-face with someone who cares can be extremely helpful.

• Feelings can get really bottled up and a care partner can become overwhelmed. Writing can sometimes release negative feelings all by itself. At times the care partner might see the humour in what was once a stressful situation. Consider talking to a Phycologist if caregiving responsibilities become to over whelming.

• Make use of available resources – Being a care partner doesn't come with an instruction manual, but there is a wealth of resources in the community, at workshops and online to help provide effective care for the care partner. A care partner needs to learn about the symptoms, treatment, and behavior management. As the disease progresses and challenges change, the care partner needs to update skills and find new ways of coping.

• Join a support group if there is one in the community or surrounding communities. There’s one for just about every situation. The care partner will find that their not alone and will learn from the experiences of others who have faced the same challenges. Connecting with others who know first-hand what the care partner is going through can also help reduce feelings of isolation, fear, and hopelessness.

• See the funny side - Humor is a well-known antidote to stress, sadness, illness, and boredom. Sometimes a care partner just needs to chuckle at the absurdities that one experiences and surround themselves with laughter. Instead of heavy dramas on TV watch funny episodes of your favorite sitcom. An infectious good mood can help replenish inner strength and sooth the person with dementia.

• The care partner should make an honest assessment of their strengths and weaknesses. The care partner may be able to keep up the spirits of the person with dementia, but do they have the strength to attend to the physical needs?

• Spiritual Health - Whatever a person's beliefs, a care partner needs to make an effort to look after their spiritual health. It is the main source of strength. A person's spiritual health is just as important as their physical health. Many care partners place a high premium on faith and religious commitment. Religious leaders can offer spiritual guidance in addition to practical aid.

• Flexibility - The ability to modify thoughts, emotions, and behaviors in response to change. As the disease progresses the care partner must be able to adapt to the changes quickly.

Preparing for the Progression of a Debilitating Disease

One of the biggest challenges for a care partner of a person with dementia is to accept what is happening to the person they are caring for. At each new stage of the disease, the care partner has to alter their expectations about what the person is capable of doing. By accepting each new reality and taking time to reflect on these changes, the care partner can better cope with the emotional loss, and deepen the feelings of satisfaction of the love and care they have provided. The more a care partner learns about the person's disease and how it will progress over the years, the better they will be able to prepare for future challenges, reduce frustration, and have reasonable expectations. In the early stages of some dementia's, a care partner can support the person with dementia but the person’s cognitive and physical regression ultimately means 24-hour care will be required in the future. Though it may be hard to contemplate such a difficult outlook, the sooner plans are in place, the more the person with dementia can be involved in the decision-making process. Paying for long-term care can be a major source of stress, so it’s important to research all options as early as possible. Consult with the person's medical team and other family members to make legal and financial arrangements and determine the long-term care options that are best suited for the person with dementia and the care partner.

10 Signs of Care Partner’s Stress

If a care partner experiences any of these signs of stress on a regular basis, they need to make time to talk to their doctor.

1. Denial about the disease and its effect on the person who has been diagnosed. "I know Mom is going to get better."

2. Anger at the person with Dementia, anger that no cure exists, or anger that people don't understand what's happening. "If he asks me that one more time I'll scream!"

3. Social withdrawal from friends and activities that once brought pleasure. "I don't care about getting together with the neighbors anymore."

4. Anxiety about the future. "What happens when he needs more care than I can provide?"

5. Depression that begins to break the care partner’s spirit and affects their ability to cope. "I don't care anymore."

6. Exhaustion that makes it nearly impossible to complete necessary daily tasks. "I'm too tired for this."

7. Sleeplessness caused by a never-ending list of concerns. "What if she wanders out of the house or falls and hurts herself?"

8. Irritability that leads to moodiness and triggers negative responses and actions. "Leave me alone!"

9. Lack of concentration that makes it difficult to perform familiar tasks. "I was so busy I forgot we had an appointment."

10. Health problems that begin to take a mental and physical toll. "I can't remember the last time I felt good."

Care partner burnout

When prolonged and excessive stress from caring for a person with dementia leaves the care partner feeling emotionally, mentally, and physically exhausted, they may be facing burnout. Burnout reduces productivity and energy, leaving the care partner feeling helpless, hopeless, angry, and resentful. Eventually, the care partner may feel like they have nothing more to give.

The warning signs of caregiver burnout include:

• Excessive stress and tension

• Debilitating depression

• Persistent anxiety, anger or guilt

• Extreme irritability or anger with the dementia patient

• Decreased overall life satisfaction

• Relationship conflicts and social isolation

• Lower immunity and greater need for healthcare services

• Excessive use of medications, drugs, or alcohol.

Burnout can damage the care partner's health and the health of the person being cared for. It's important to seek medical advice if the care partner is suffering from burnout.

Coping with stress and burnout while caring for a person with dementia

• Overwhelming emotions as capabilities lessen

Bonds deepen through care, companionship, and service

• Fatigue and exhaustion as care partners demands increase.Problem solving and relationship skills grow through experience

• Isolation and loneliness as independence disappears. New relationships form through education and support.

• Financial and work complications as costs rise and resources are challenged. Unexpected rewards develop through compassion and acceptance.

References:

Brochure Documentation Guide

www.meetup.com

Family Caregivers Alliance

www.helpguide.org

EOD Tool- Caregivers.pdf

www.azdirectcare.org/uploads/2011_FundChap6-ObsrvRptDoc.pdf

Caregiver Document Organizer.pdf

Group Checklists Forms

CaregiverJournal.pdf

Prepared by: Jody McCoppen - October 2016