Last year, we met a man wandering our street who asked us how to get home but could not remember where he lived. He said he had come to see his brother who lived on our street but could not remember the address. Fortunately, he had a sheet of paper with a contact number and we were able to put him in the car and return him safely to his home. This was a classic case of a person suffering from mild to moderate Alzheimer’s disease.
The first things an Alzheimer’s patient has to deal with are the problems with memory and making decisions. The patient will start feeling despondent. One of the first things to reassure them about is that you will always be there and that they are going to have bad days and good days. The patient and you will probably notice some or all of the following problems:
- Repeating questions
- Problems with paying bills and handling money
- Delay in completing normal routine tasks
- Personality changes where the patient may be withdrawn or extremely irritable
- Difficulty in expressing thoughts
- Misplacing items.
When moderate Alzheimer’s is present, the patient becomes even more confused and memory loss begins to interfere with daily functioning. Getting dressed becomes difficult and they may suffer from delusions and hallucinations. When severe Alzheimer’s sets in, the patient will be unable to communicate, will not be able to function at all and will spend most of the time in bed. They will need constant care and attention.
If you really want to understand what an Alzheimer’s patient is going through, an excellent book is The Best Friends Approach to Alzheimer’s Care by Virginia Bell and David Troxel. This book makes us aware of the patient’s feelings of being embarrassed, frightened and lonely as they experience a loss of memory and self-care skills. One of the most important pieces of advice in this book is that we should never correct a patient who tells us that a certain relative, who is long deceased, has been around recently. They also recommend imagining what it must be like not to be able to do any of our favorite activities anymore.
Here are 10 things to keep in mind if you have a loved one with Alzheimer’s or if you are a caregiver.
1. Medication can help to maintain mental health
There are several drugs now approved by the FDA which can help a patient by delaying the disease’s progress. They will not work for everybody and they may only work for a time. The important thing is to help your loved one get an early diagnosis and treatment which may include these drugs.
As a supportive caregiver you can help in the following ways in managing the medication process:
- Keep a list of the meds and dosages in a safe place at the patient’s home and also a copy for your own purse or wallet
- Learn the times they should be given. You may have to call the patient to remind them if they are inclined to forget
- Note any side effects and what progress has been made and report them to the doctor
- Buy a pillbox with different compartments and a built-in alarm reminder.
- Shared calendars can be a great help
As the disease progresses, you may have to make sure that someone is present when the meds are taken.
2. Helping a patient to deal with memory loss
The patient will be upset at having to repeat questions and not take in the answers. While they can remember the long distant past perfectly, their memory of recent faces and events is at best patchy, at worst a complete blank. Their main worry at this stage is probably one of abandonment. You, as a caregiver and/or family member have to balance their desire to be independent with living safely. Here are some practical, easy ways you can help them cope:
- Use post its at strategic points in the house to remind them to do certain things, taking keys, turning off the gas and so on. You can also get a personal voice prompt recording which kicks in as they approach the door.
- Calendar clocks which show the month, date and time clearly are useful.
- Color coded devices can help the patient find misplaced items.
- Sensors built in to set off alarms in case of flooding or gas leaks.
3. Get help and support
Reach out to the many associations which will help you to support and assist a loved one. Find your local chapter of the Alzheimer’s Association if you live in the USA. They have a wealth of information and will help you with workshops and other resources. They also have a 24 hour helpline. You are not alone. They will also help you to look after yourself so that you do not suffer from burnout. In the USA, there are 15 million caregivers looking after people with this disease. If you live in another country, there may be similar organizations. It is well worthwhile reaching out.
4. Help them feel valued
The Alzheimer’s patient usually feels that their self worth is at risk and they want to retain their sense of identity and above all they want to be respected. Here are some of the ways you can help to prevent these feelings from being eroded:
- Do not be too fussy about household routines and faulty memory when there are no safety issues
- Dedicate time to chatting and avoid memory problems- let them go
- Spend time with them doing things they still enjoy
- Always include them in conversations
- Always be affectionate and reassuring – avoid criticism at all costs.
5. Coming to terms with skills erosion
These issues will inevitably come up as decreased cognitive abilities may mean that a patient will no longer be able to drive. Watch the video below on how a supportive conversation will help this man to come to terms with not being able to drive anymore. In the moving video, his wife hits the nail on the head when she states: “A real man tries to understand change tries to act in a responsible way.” Acknowledging the difficulties that giving up driving can involve demands empathy. Also, talking about possible solutions and reinforcing your affection are other ways to approach what can be a very thorny subject.
6. How to help a patient to dress
Dealing with this can be easier if you try to encourage the patient to make choices. You can also help by making the most frequently worn clothes easily accessible. Make sure that buttons are undone and that zips are open. If they have problems in remembering how to dress, encourage them by giving them step by step instructions, one at a time. You can get the full dressing cheat sheet here.
7. Help with vision/spatial problems
One of the consequences of this disease is that the patient may have difficulty with vision and also interpreting colors and distance. Once the regular eye check ups have been dome and you are helping the patient wear the right glasses, it is important to look at the home environment so that they can negotiate it safely, without fear of falling. An occupational therapist is the best person to do this. The following changes may be recommended:
- Suitable handrails at critical points in the house
- Try using contrasting colors when setting the table. A white plate on a red tablecloth is much more easily recognizable than plates and cloths of the same color.
- Use similar color contrasts for toilet seats so they are more noticeable
- Improve lighting all over the house to reduce the risk of falls
- Keep wall and floor designs plain. If they contain any geometrical patterns, these may be seen as obstacles by the patient.
8. Adjust to dramatic changes
As the disease goes through its various stages, there may be challenges which will seem overwhelming at first. But the rewards are also considerable as you will be able to strengthen the bonds through compassion and caring. In addition, there will be new relationships as you avail of support groups. Accept all the help you can get whether it is cleaning, shopping or transporting. You are going to need a network of people to help, so rally round friends and family.
9. Plan ahead
Further down the road, you have to make plans for 24/7 care. That may mean making decisions fairly early on. Most patients know that this is a distinct possibility and they want to be able to decide with their loved ones, sooner rather than later. Being involved in such a decision is important for them.
You will have to assess whether your finances can permit extra care and help. Look at all the options. There is a series of videos here which will help you to deal with various issues.
10. Learn how to reflect
Learning acceptance of each new loss of memory or erosion of skills is very hard to bear for both caregivers and patients. Caregivers need to reflect on what the new reality means and make the necessary adjustments. There are still many positive things that can come out of this experience:
- Be grateful for what your loved one can still achieve
- Organize activities in which you can both still participate and enjoy
- Keep a diary and write down your sad thoughts, your successes and your unfailing love
- Make mindfulness and relaxation an integral part of your daily routine
I once watched a YouTube video of a man talking about his wife and her steady loss of cognitive function and abilities as she went through the various stages of Alzheimer’s. One phrase has stuck in my mind. He said: ‘Today is going to be her best ever.’ Living one day at a time and savoring any joyful moments is probably one of the best things a caregiver and a patient can do.
“Dementia is often regarded as an embarrassing condition that should be hushed up and not spoken about. But I feel passionately that more needs to be done to raise awareness, which is why I became an ambassador for the Alzheimer’s Society.” – Kevin Whately