Caregiving for Late-Stage Alheimer's Patients -- What to Expect, What to Do

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The late stage – what to expect

In the late stage of the disease (also referred to as "severe" or "advanced Alzheimer's disease"), individuals experience increased mental and physical deterioration and need 24 hour care. Individuals:

* experience severe cognitive impairment in memory, ability to process information and orientation to time and place
* lose their capacity for recognizable speech, although words or phrases may occasionally be uttered. Non-verbal communication will become increasingly important.
* need help with eating and using the toilet and there is often incontinence of urine and stool
* lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. The brain appears to no longer be able to tell the body what to do.
* have impaired swallowing
* may lose weight

Because the person with late stage Alzheimer's disease cannot initiate activity alone, family and caregiver involvement is necessary, and in many cases, the person will need to live in a care facility or, if at home, with added support. Whether at home or in a facility, the goal for late stage Alzheimer care should be enhancement of the quality of life – to be at the highest level of well being possible – physically, mentally and emotionally. Activities should be tailored to remaining strengths and abilities, taking into consideration the person's life history, likes and dislikes.


Suggestions for the late stage

1. Connect through the senses

Even if the person can't communicate verbally or no longer recognizes you, they likely will still be able to communicate in other ways and feel your affection and reassurance. People in this stage experience the world primarily through their senses, so use the senses to maintain a connection.

* Touch: Hold the person's hand. Brush their hair. Give a gentle massage to the hands, legs or feet. Stroking a pet or a soft fabric can be calming.
* Smell: The person may enjoy the smell of a favourite perfume, flower or food which brings back happy memories.
* Vision: DVDs can be relaxing for people with Alzheimer's disease, especially ones with scenes of nature and soft, calming sounds.
* Hearing: Reading to the person can be comforting, even if they may not understand the words. The tone and rhythm of your voice may be soothing. What you say is not as important as how you say it. Speak gently and with affection. Your tone can help the person feel safe and relaxed. Read a favourite story or poem.
* Music is a universal language that promotes meaning for most of us. Play music, especially the type of music the person has enjoyed throughout their life.
* Time spent outdoors may help relieve anxiety and depression and encourage healthy sleeping patterns.

2. Reminisce

Reminiscing is a way to validate the "being" of a person and a way for the person to feel "I am here. I have a history".

* Fill a box with items that represent the person's interests, favourite activities, past work and happy memories from the past. Use these to connect to the person or foster conversation when the person is able.
* Look at photographs or DVDs of past events.
* Tell stories about past celebrations and enjoyable times.

3. Spirituality

* For many people, being part of a faith community is an important component of their identity. Tapping into the spiritual traditions which have been a significant part of the person's life can provide solace, continuity and a sense of self. Providing access to familiar rituals, symbols and music, or reading familiar scripture passages can trigger memories and connect with a person at a deeply emotional level when cognitive abilities have been severely impaired.
* For many people, connecting to nature, music, ritual or stories can fulfill a spiritual need.



Care issues

Below are some of the physical care issues likely to occur in the late stage. The following tips may help achieve maximum health and comfort. Consult your health-care professional on specific techniques or if you have any questions.

1. Difficulty swallowing food and liquids

* Provide a quiet and calm environment, away from television and distractions.
* Ensure the person is in a comfortable, upright position during and after a meal.
* Allow plenty of time for the person to eat; several smaller meals or snacks throughout the day may be easier to manage than three bigger meals.
* Foods that are soft or bite-sized may be easier to handle; be prepared for the possibility of choking as swallowing becomes more difficult.
* Encourage the person to feed themselves by giving visual cues or gently using hand-over-hand prompting; if the person needs assistance, offer the food and drink slowly--you may have to remind the person to swallow. Finger foods that do not require the use of cutlery can promote independence. Put one plate and utensil at their place to simplify the environment.
* Encourage fluid intake; substitute fruit juice, gelatin, sherbet, or thickened liquids if swallowing water is difficult.
* Record the person's monthly weight.

2. Caring for the skin and body

* If the person is bed-ridden or chair-bound, change the person's position at least every two hours to relieve pressure. Consult a health-care professional about the proper technique to lift and turn the person.
* Protect bony areas with pillows and pads.
* Wash the skin gently and blot dry using minimal force and friction.
* Prevent "freezing" of the joints by maintaining the person's range of motion. A physiotherapist can demonstrate the proper technique for range of motion exercises.

3. Maintaining bladder and bowel function

* Set a toileting schedule.
* Eliminate caffeinated drinks, which stimulate urination.
* Provide adequate hydration during the day, but limit liquids at least two hours before bedtime.
* Use adult briefs and bed pads as needed.
* Monitor bowel movements.

4. Decreasing the risk of infection and monitoring for pain

* Pay careful attention to oral hygiene.
* Treat cuts and abrasions immediately.
* Make sure that the person receives an annual flu vaccine.
* People with late stage Alzheimer's disease may have difficulty communicating pain and family members and caregivers must learn other ways of recognizing pain and illness. Signs to watch for and report to your health-care professional include:
o a pale or flushed skin tone; dry, pale gums; mouth sores; vomiting; feverish skin; or swelling of any part of the body
o body language and nonverbal signs that may indicate discomfort
o changes in behaviour (especially anxiety, agitation, shouting and sleep disturbances)



Planning

1. Care

Refer to and follow any documents that the person with the disease has established to address his or her care wishes. If plans are not already in place, start the process as soon as possible. Establish who will be responsible for making care decisions. Follow the person's wishes, if you know them. Otherwise, decisions will need to be based on the person's lifelong values and desires and what you think the person would want. Your local Alzheimer Society can advise you about care issues and the kinds of professionals who can help to address them.

The person with the disease may be living at home with a family member, have help coming into the home or, in many cases, residing in a care facility. If you are caring for someone at home, you will need to have close connections to a physician and all or some of the following: visiting nurse, social worker, occupational therapist, home support services. They will be critical in working with you through this stage of the disease, helping you create a plan for the best care possible and meeting with you regularly to review the plan. Also, learn about the services that will be available as the person's disease progresses and both your needs change (homecare services, respite care, community programs like Meals on Wheels and care facilities). If considering a care facility, learn what to look for and how to make the move as easy as possible.

If the person resides in a care facility:

* Keep current with the doctor and/or facility staff about the person's condition, care and treatment.
* Find out the key contacts for specific areas of caregiving eg. medical, social and spiritual.
* Tell staff your feelings and concerns, what help you need or questions you may have.
* Ask to have regular care planning meetings where family members and care providers can attend.
* Ask for a copy of the care plan.
* Discuss options for meeting the person's needs and preferences. Ask questions if you need terms or procedures explained.

2. Legal and financial

If not already in place, arrange financial and legal matters and establish who will be responsible for these functions. Follow the person's wishes, if you know them. If there are no explicit instructions for these matters, the family must make decisions taking into consideration the person's values, desires and what they believe the person would have wanted. Your local Alzheimer Society can advise you on what issues will need to be addressed and the kinds of professionals who can help with them.



More suggestions – taking care of yourself

Despite your best efforts, providing care will become more difficult as the disease progresses, and the person you are caring for becomes more dependent on you. This is a time when many family members need increased support for themselves. The following tips are to help family members take care of themselves.

* Avoid isolation and loneliness by maintaining social activities and contacts as much as possible.
* Take care of your own health.
* Learn what happens in this stage of the disease.
* Join a caregiver support group to connect with others living with the day-to-day issues of Alzheimer's disease and facing practical challenges, grief and loss.
* Be aware of the signs of stress and how it can affect your health and ability to provide care.
* Seek professional help if feelings of depression or anxiety are overwhelming.
* Be flexible about expectations.
* Try to be positive and keep a sense of humour.
* If the person you support is not in a care facility, make time for yourself by using respite care options, professional homecare services, family members or friends, volunteer caregivers and friendly visiting programs.



What's next?

Because Alzheimer's disease is progressive, you will continue to need more information and support. You may want to take time in the early stage of the disease to think about what is important to you in the years that you live with Alzheimer's disease. The next sheet in this series is The Progression of Alzheimer's Disease – End of Life. Learning how the disease progresses and the changes that it will bring can help you to make plans for the future. However, only you can decide when is the right time to seek more information.

Help and support from the Alzheimer Society

Living with Alzheimer's disease at any stage can be very challenging. Whether you are the person with the disease or someone who supports them, it is normal to feel a variety of emotions including grief and loss throughout all stages of the disease. It is important to acknowledge your feelings, care for yourself and seek the practical help and emotional support that you need.

The Alzheimer Society in your community can provide educational resources to help you learn more about the disease, referrals to help you access the practical support you need, and one-on-one and group support to help cope with the emotional impact of the disease. Contact your local Alzheimer Society.

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Resources

1. Alzheimer Society. www.alzheimer.ca (of particular interest: "Alzheimer Care – Late Stage and End-of-Life Care, "Forums" and "Resources" sections). Resources 2-6 can also be obtained by contacting your local Alzheimer Society or by visiting www.alzheimer.ca.
2. Alzheimer Society of Canada. (1999). Guidelines for Care: http://www.alzheimer.ca/english/care/guidelines-care-intro.htm
3. Alzheimer Society of Canada. Safely Home Program: http://www.safelyhome.ca/en/
4. Alzheimer Society of Canada. (1998). The Alzheimer Journey: At the Crossroads, workbook and video (Module 3).
5. Alzheimer Society of Canada. (2008). The Progression of Alzheimer's Disease – Overview; Early Stage; Middle Stage; Late Stage; and End of Life information sheets.
6. Alzheimer Society of Canada. (2008). Caregiving options: considering long-term care information sheet: http://www.alzheimer.ca/english/care/ltcare-intro.htm
7. Alzheimer's Association, US. Late-stage care – Providing care and comfort during the late stage of Alzheimer's disease. www.alz.org/national/documents/brochure_latestage.pdf

[ This information provides guidance but is not intended to replace the advice of a health-care professional. Consult your health-care provider about changes in the person's condition, or if you have questions or concerns.]