Dementia & Alzheimers

How to be a Care Giver for those in Need

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Goals of care

Doctors always have a goal in mind when they order a medical treatment. Some treatments are given with the goal of curing disease, prolonging life or avoiding premature death. Other treatments are given to maintain functioning, or relieve suffering and provide the best possible quality of life for the patient.

It is important to remember two things about medical care for a person with dementia. Firstly, no matter what treatment people with severe or end stage dementia need and receive, it will not improve their brain function. Their deteriorating health is due to dementia which is not curable. Secondly, medical treatment provided to any person, with or without dementia, is based on the clinical judgement of the treating doctor(s). Doctors are under no obligation to provide treatment that is burdensome and of no benefit to a patient. Patients or their family members cannot demand medical treatment that offers no benefit to the patient.

The goals of medical care will change over time for a person with dementia. Early in the illness, care is focussed on slowing the dementia progression, improving or maintaining the functioning of the person with dementia, and supporting the carer. The broad goal of care can be thought of as full treatment possible. The person with dementia is given all care possible, to prolong their life, including being hospitalised if necessary for investigations, treatments, and surgery if indicated for co- existing conditions. However, more aggressive treatments aimed at prolonging life, like using ventilator machines to keep a person breathing, are not necessarily appropriate and may not be given.

As the brain fails due to the dementia, the goals of care slowly change. The emphasis shifts from keeping the person alive and prolonging life, to making sure the person is safe, comfortable, and having the best possible quality of life. The goal of care becomes limited additional interventions. Some life-prolonging treatments are offered to support the person, such as IV or IM antibiotics, intravenous fluids for dehydration, and nutritional supplements if the person has weight loss that can be reversed. Unexpected events such as a fractured hip following a fall are treated with surgery if necessary, because treating the hip fracture will keep the person comfortable.

Limited additional interventions are an appropriate goal of care for people with moderate to severe stage dementia.

As a person approaches end stage dementia the goals of care move away from using any treatments that may prolong life, towards using
interventions that improve comfort. This goal of care can be thought of as palliative (comfort) care.

A person with dementia receiving palliative (comfort) care will be actively monitored to see if symptoms like pain, breathlessness or agitation occur. If the symptoms are causing problems, they are managed so the person is comfortable.

The doctor may still want pathology tests and other tests done, but they are done only if knowing the result leads to an intervention that improves comfort.

Palliative (comfort) care is given until natural death occurs. It is the most appropriate goal of care for a person with end stage dementia. The person receives careful assistance with eating and drinking while they are willing and safely able to swallow. Oral antibiotics may be given, only if they assist in managing discomfort. Transfer to hospital generally does not occur and is often not advisable for people with end stage dementia.

From reading this webpage, you will realise that major health issues face a person with end stage dementia. Planning for those issues can relieve anxiety and guilt for the person responsible, and other people close to the person with dementia. This process is called advance care planning, and is discussed below.

Advance care planning

Advance care planning is all about talking … about the future health care of a person. The point of talking about future health care for a person living with severe or end stage dementia is that medical care for both expected and unexpected health issues can be considered well before a crisis. In this way, decisions can be made calmly, based on what the person with dementia’s wishes would be if
they could talk for themselves. Misunderstandings and possible areas of conflict can be dealt
with so everyone comes to a clear and agreed understanding about the care to be given to the person with dementia.

Usually a number of advance care planning discussions are needed. Key times when a discussion might be held are when the person with dementia is diagnosed with a new medical condition that will impact on their health, after a hospital admission, or on admission to a residential care facility. Topics that might be discussed, depending on the circumstances, include:

the values, wishes, beliefs and expectations of the person with dementia regarding what quality of life means to him or her. The person responsible and other family and friends contribute by recalling conversations and events where the person with dementia indicated their beliefs.

• the role and importance of the person responsible as a substitute decision-maker. This person needs to “put himself in the shoes of (the person with dementia)” and make decisions from that person’s viewpoint.

• the understanding of everyone involved about the dementia diagnosis, and what may happen in the future.

• benefits and risks of any treatment options.

• the goal of care, so the person with dementia will have the best possible quality of life, with their wishes respected.

• the person with dementia’s preferences for end of life care.

Making decisions about another person’s health care is a major responsibility. Some families prefer more than one person to help with the decision-making. However, the person responsible is the person who legally can consent to, or refuse consent for, any treatment, so that person has the final say. By involving other family members in advance care planning discussions, the person responsible can make sure everyone concerned understands the issues and the reasons for decisions.

As stated earlier, the more the person responsible and family members know about dementia and the changes that occur over time, the more likely it is that the person with dementia will receive care that respects their wishes and improves comfort and quality of life. Asking lots of questions can help.

Some questions to think about and discuss with other family members or close friends, your GP and other health professionals:

1. Would the person I know with dementia want to be transferred to hospital for full treatment possible?

2. Would the person I know with dementia want to have intravenous antibiotics for every infection, which might make their life longer but will not improve their memory or function? What about if that meant they would need to go to hospital, would they still want the intravenous antibiotics, or would they prefer to remain in their home (including a residential care facility), receiving comfort measures which could include oral antibiotics?

3. If the person I know with dementia had a heart attack, would they want to have treatment to try to restart their heart if it stopped?

4. If the person I know with dementia had a stroke and couldn’t swallow, or they were having difficulty swallowing due to the effects of the dementia, would they want a feeding tube inserted into their stomach?

Some people want to continue to provide a lot of care to their loved one after they move into a residential care facility. Other people prefer not to help at all. If you want to share care, please discuss your involvement with the staff at the facility.
Even though the person with dementia may not be able to talk to you, there are a number of things you can do while visiting to express your affection and concern. You could consider:

• massaging the person’s hands, feet or scalp;
• reading a favorite book, newspaper , or letter from another family member to them;
• talking to them about family and community life;
• bringing in photographs from times you’ve shared and reminisce out loud;
• playing some favorite pieces of music;
• bringing in some favorite food and giving the person a little taste of it. Even if the person with dementia can no longer swallow properly you can put a little taste on the end of their tongue, using a cotton bud or similar.

Regardless of whether or not you are involved in the care of the person living with dementia, be assured that the best possible care will be given to them.

The Dying Process

In spite of good care, and regardless of where that care is given, the time will come when the person with dementia becomes so sick that they are likely to die.

This may be difficult for you to read, so if you have any questions or concerns after you read it please
discuss them with the health professionals caring for the person with dementia you know, your religious or spiritual advisor, or contact one of the support services listed below.

No-one can tell you exactly when death will occur. In the final stages of dementia, signs such as swallowing problems, weight loss and muscle weakness together point to the fact that the general health of the person is getting worse.

A person with end stage dementia may also become uninterested in food and fluids. It has been suggested that this is also a sign that the body is beginning to prepare for death.

Any infections the person has been experiencing may continue throughout these final months of life, and will be treated according to the agreed goals of care for the person.

Eventually no amount of treatment, with antibiotics or any other method, even if the person is in hospital, will prolong life.

The person will no longer want to eat or drink, and may seem to sleep all the time. A person who is no longer eating or drinking may continue to live for a few days, sometimes even longer.
Gradually over the final days or hours the person may slip into a coma and be unable to respond to anything. It may be difficult for you to come to terms with, but once the person is in a coma they will usually die within a short period of time.

The doctors and nurses looking after the person with dementia will do everything possible to keep them comfortable during this time. This may include giving medications or extra oxygen to improve their comfort. The nurses will keep their mouth moist, the skin clean and dry, and will reposition them every few hours. They will not experience hunger at this late stage of life.

You can help at this time should you wish to do so. Simple acts like massaging the person’s hands and feet, and keeping their lips moist with lip balm can add to their comfort.

Playing soft music, keeping the light dimmed in the room and noise kept to a minimum can all add a sense of peace.

At the time of death

Contacting the family, If the individual is in a residential care facility or hospital, and the staff see that their medical condition is deteriorating, they will want to contact the family members and other people close to the dying person to talk to them about what is happening.

The family and significant other people will usually be given the choice about whether or not to come to stay with the dying person. This is an individual choice, there is no right or wrong thing to do, but it will help if you have thought about this situation and talked to the staff about it in advance.

Sometimes it is hard to tell in advance that someone is about to die. While every effort is made to contact the family before death occurs, there are some occasions when that is not possible. Some people with dementia or other diseases may die of a heart attack or stroke. This is more difficult to predict, because it is likely to be sudden, and may mean the staff cannot contact the family to be with the person right at the time of death.

If no relatives are present at the time of death, one of the nurses caring for the person will invite them to the facility or hospital to spend some time with the deceased person. The family are under no obligation to come in if they prefer not to.

Some families prefer not to be contacted overnight but request that they be informed of the death the next morning. This is a personal decision. There is no right or wrong thing to do.

The doctor or hospital doctor is contacted to attend to the legal documents. In some facilities and hospitals the staff call the appointed funeral director to make plans for the deceased person to be taken into their care. In other facilities, the family are expected to contact the funeral director themselves, so again it is important for you to talk to the staff about your own circumstances and arrangements.

Death is never easy to talk about. Even health professionals with a great deal of experience
have difficulty thinking about death and talking about it. If the person with dementia is living in a residential care facility then the staff may have spoken to you about the funeral many months or years previously. Although you may choose not to discuss this issue, you are strongly encouraged to make some preliminary plans in advance. Even when death has been expected for a while, at
the time you may still feel shocked and numb. Decisions about the choice of funeral director, type of service (burial or cremation), who will officiate, whether you want music or readings, and who will speak about the deceased person can be planned in advance.

Looking after you - The Care Giver

If you are looking after a family member or friend with dementia you are a Care Giver. To be able to carry out your role as a carer you need to maintain your own physical and emotional health. This may involve seeking assistance and support with everyday caring needs. Taking time off from your caring duties and having time away from the person you care for is also vital. Being conscious about your own diet, exercise and ensuring you get enough sleep will keep you strong and help to maintain your resilience. If your health begins to deteriorate, you may not be able to help your loved one.

You should now understand that dementia is an incurable condition. Most of us can never prepare ourselves fully for the death of a relative or loved one. Everybody involved in the care of the person with dementia will have a different way of coping with his or her death. Although you will feel pain and sadness when the person with dementia is no longer with you, in time you will be able to remember the happy times you had together.

When the one you have cared for has died, you may feel at a loss as you adjust from being a Care Giver. You may find yourself reminiscing on the past instead of focussing on the future. There are many support services available to help you get through this time, some of which are listed Below. Your GP, religious and spiritual advisors can help you through this difficult time. Please do not hesitate to call them.


Glossary of key terms

Alzheimer’s disease
Alzheimer’s disease is a progressive, degenerative disease that affects the brain. It is the most common form of dementia. Approximately 50% to 70% of all dementia is Alzheimer’s disease.

Aspiration pneumonia
An acute inflammation of the lungs, caused by breathing in infected material such as saliva or gastric material.

Complete unconsciousness, when the person has lost all reflexes and cannot respond to stimuli such as pain or speech.

Dementia is the term used for a loss of intellectual capability (called cognitive function) that affects:
• memory and learning;
• attention, concentration and orientation;
• thinking (eg problem solving, abstraction);
• calculation;
• language (eg comprehension, word finding);
• geographic orientation.

Dementia is a sign of brain disease, and has about 100 known causes.

Dementia with Lewy bodies
A type of dementia similar to Alzheimer’s disease. Abnormal spherical structures, called Lewy bodies, develop inside nerve cells in the brain, and cause degeneration and death of the nerve cells. Visual
hallucinations, tremors and stiffness similar to Parkinson’s disease, and fluctuations in mental state are typical of this condition.

Difficulty with swallowing.

Fronto-Temporal Lobar Degeneration
A group of dementias which have degeneration of one or both frontal or temporal lobes of the brain. Includes Pick’s disease. Effects may include changes in personality, emotions, behaviour, and use of language, depending on what part of the brain is affected.

Vascular Dementia
A type of dementia caused by a variety of problems that affect blood flow to the brain, which results in multiple strokes. Vascular dementia is the second most common form of dementia after Alzheimer’s disease.

1 Mitchell SL, Teno JM, Kiely DK, Shaffer ML, Jones RN et al 2009. The Clinical Course of Advanced Dementia. NEJM Vol 361 No 16 pp 1529 – 1538.

2 Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. Cochrane Database of Systematic Reviews 2009, Issue 2.

For further information or support, contact:

Alzheimer's Association
Western and Central Washington State Chapter
North Tower, 100 W. Harrison St, N200
Seattle, WA 98119-4170
Phone: (206) 363-5500
Toll-free: 1-800-272-3900
Fax: (206) 363-5700
Office Hours: Monday - Friday, 8:30am - 5pm

Alzheimer's Association
Coeur d'Alene
1042 W. Mill Ave., Ste. 205
Coeur d'Alene, ID 83814
Phone 208.666.2996

Alzheimer's Association
910 W. 5th Ave., Ste. 256
Spokane, WA 99204
Phone: 509.473.3390

Alzheimer's Association
Southeastern Washington
P.O Box 5072
Pasco, WA 99302
Phone: 509.713.3390

Alzheimer's Association
Oregon Chapter
1650 Northwest Naito Parkway, Suite 190
Portland, OR 97209

Alzheimer's Association
Cascade Coast office
1000 Willagillespie Rd, Suite 100
Eugene, OR 97401

Alzheimer's Association
Central Oregon office
777 NW Wall St, Suite 104
Bend, OR 97701

Alzheimer's Association
Southern Oregon office
711 E Main St, Suite 17B
Medford, OR 97504

Southwest Washington AAA
201 NE 73rd St
Vancouver, WA 98665(360) 735-5720

Multnomah County Aging and Disability Services
421 SW 5th Ave
Portland, OR 97204(503) 988-3620
(503) 988-6945 (fax)

Community Action Team
125 N 17th St
Saint Helens, OR 97051(503) 397-3511
(503) 397-3290 (fax)

Washington County Disability, Aging and Veteran's Service
180 E Main St
Hillsboro, OR 97123(503) 846-3060

Clackamas County Social Services/Aging and Disability Services
PO Box 2950
Oregon City, OR 97045(503) 655-8640

Clackamas County Social Services/Aging and Disability Services
2051 Kaen Rd
Oregon City, OR 97045(503) 655-8640

Northwest Senior and Disability Services
3410 Cherry Ave NE
Salem, OR 97303(503) 304-3400
(503) 304-3434 (fax)

Northwest Senior and Disability Services
PO Box 12189
Salem, OR 97309(503) 304-3400
(503) 304-3434 (fax)

Mid-Columbia Council of Governments/Senior Services
1113 Kelly Ave
The Dalles, OR 97058(541) 298-4101
(541) 298-2084 (fax)

Lewis/Mason/Thurston AAA
3603 Mud Bay Rd W
Olympia, WA 98502
(360) 664-2168 (fax)

Senior and Disabled Services, A Division of Lane Council of Governments
PO Box 11336
Eugene, OR 97440(541) 682-4038
(541) 682-3959 (fax)

Pierce County Aging & Long Term Care : Aging & Disability Resource Center
3580 Pacific Ave
Tacoma, WA 98418(253) 798-4600
(253) 798-2839 (fax)

Senior and Disabled Services, A Division of Lane Council of Governments
1015 Willamette St
Eugene, OR 97401(541) 682-4038
(541) 682-3959 (fax)

Southeast Wa A & LTC
PO Box 8349
Yakima, WA 98908(509) 965-0105
(509) 965-0221 (fax)

Central Oregon Council on Aging
1135 SW Highland Ave
Redmond, OR 97756(541) 548-8817
(541) 548-2893 (fax)

Yakima Nation Area Agency on Aging - Title VI
91 Wishpoosh Rd
Toppenish, WA 98948(509) 865-7164
(509) 865-2098 (fax)

Yakima Nation Area Agency on Aging - Title VI
PO Box 151
Toppenish, WA 98948(509) 865-7164
(509) 865-2098 (fax)

Senior Services of Snohomish County
3000 Rockefeller Ave M/s 305
Everett, WA 98201(425) 388-7377
(425) 353-1212 (fax)

Aging & Adult Care of Central Wa - East Wenatchee Not Reviewed Yet 50 Simon St SE
East Wenatchee, WA 98802(509) 886-0700
(509) 884-6943 (fax)

Oregon Cascades West Counsil of Governments
1400 Queen Ave SE
Albany, OR 97322(541) 967-8630
(541) 967-6423 (fax)

Olympic Area Agency on Aging
11700 Rhody Dr
Port Hadlock, WA 98339(360) 379-5064
(360) 379-4400 (fax)

South Coast Business Employment Corporation, Area Agency on Aging
PO Box 1118
Coos Bay, OR 97420(541) 269-2013
(541) 267-0194 (fax)

South Coast Business Employment Corporation, Area Agency on Aging
93781 Newport Ln
Coos Bay, OR 97420(541) 269-2013
(541) 267-0194 (fax)

721 SE 3rd St
Pendleton, OR 97801(541) 276-1926

Aging & Adult Care of Central WA
1336 S Pioneer Way
Moses Lake, WA 98837(509) 766-2568