A number of caregivers who have left comments or emailed me have asked for my advice on dealing with their loved ones’ dementia. Since I have absolutely no personal experience in that area, I can only offer second-hand advice that I can’t personally vouch for. In two previous posts (here and here), however, I did review the book Contented Dementia, which offers a good general framework for thinking about the issue. I’ve also recently come across a set of “Tips for the Caregiver” from the Bureau of Geriatric Psychiatry in Tuscaloosa, AL. The tips are taken from a larger “Caregiver Packet”* which is also well worth reading.
Here’s a bit of a summary (in no particular order): I’ve used the masculine pronoun throughout to keep clarity.
- Remember that the patient is dealing with confusion, anxiety, loss of self-esteem, irritability and feeling of depression.
- Before asking the patient to do something, address him by name to get his attention and maintain eye contact. Ask only one question at a time and give him time to respond. He is having to think a lot harder than you would to answer the same question. Allow him adequate time to respond in conversation or perform an activity. Rushing him will only increase his confusion.
- An Alzheimer patient has difficulty coping with change. Try to maintain a regular daily routine; it will help the patient maintain his abilities and may also save you time and energy.
- Performing his own daily tasks (eg dressing) helps to maintain his self-esteem. If you help him before he really needs it, he may forget how to do it for himself.
- Break down all tasks into simple steps. Tell the patient slowly, one step at a time, what to do. Giving too many directions at one time, or giving them too quickly, will increase the patient's confusion. If the patient gets upset and becomes uncooperative, stop and try again later.
- Keep your expectations of what the patient can do realistic given his degree of impairment.
- Use humor whenever possible, though not at the patient's expense.
- Do not disagree with made-up stories or mistaken impressions. Do your best to understand his reality and respond to it. Do not contradict him. (See my posts on Contented Dementia (here and here).
- Be consistent. If you say that you are going to do something, follow through with it.
- If the patient repeatedly asks a question, remember that he cannot remember the answer you have just given him. Reassure the patient that everything is fine and that you will be with him and will help him.
- Repeating the same act may be meaningful for the patient and provide relief of tension; if he spends 20 minutes contentedly wiping the kitchen counter, let him continue.
- If you do get angry, use "I" statements as opposed to "you" statements. Example: "I'm feeling angry, I need to rest now," instead of "You make me so angry, I can't stand to be here.” Remember, he can't change his behavior for you. Also, he is frightened to see you angry at him when he feels so helpless. Talk to a friend when you need to blow off steam. Support groups are a great place for this.
- Always remember the importance of love and affection. Sometimes holding hands, touching, hugging and praise will get the patient to respond when all else failed.
- When he can no longer communicate verbally, keep talking to him about those things that were important to him, such as yourself, family member, etc. Speak clearly, say names of people he loved, touch him, massage his arms, feet, head and back. Touching is the greatest communicator of love.
Modified from Caregiver Packet AlzBrain.org *
Again, I have no personal experience, but these suggestions make a great deal of sense to me and may help some of you caregivers.
* Clicking on this link will produce a pop-up asking whether you trust the link. I believe it trustworthy and you can proceed.