Alzheimer’s disease and most other diseases and conditions that result in dementia are progressive in nature. Because of this you probably will not be thrown suddenly into a situation in which another person is totally dependent upon you for their care and well-being. As an Alzheimer’s caregiver you will have some time, or you have had time, to adjust and to learn your new role. This knowledge does not make the prospect or the task easier, but it does give you time to prepare. The more you learn about the disease and best care practices, the more effective will be your care. And take the time to develop a support network. Family members, professional organizations and care providers, and your faith affiliations can all provide you with much needed backup, either on an ongoing basis, or just at those times when you need help most.
There are many reasons to care for a loved one with dementia at home for as long as possible. Once you have made the choice to do so, do everything you can to make yourself and your home ready so you can be be an effective, efficient carer. This website is designed to help you do just that. Use the information and the aids and the references available here to help you be the best care partner you can be.
Communication is Key
As Alzheimer’s disease progresses it slowly erodes one’s ability to communicate verbally. One of the classic symptoms of Alzheimer’s is the difficulty of ‘finding the right word’. Another is the impairment in structuring a logically sequenced sentence. You have likely experienced this first hand and understand how frustrating these impairments are for both sides of a care relationship. Don’t stop communicating. Effective communication is not always verbal.
Read more about communicating with a person who has dementia.
Preparing for Caring | Some Suggestions for the Alzheimer’s Caregiver
Educate yourself about the disease. The more you understand the effects that Alzheimer’s disease has and the ways that it affects the behavior and cognition of its victim, the better prepared you will be to help the person in your care. This knowledge will also help you to handle your own uncertainties and frustrations.
Prepare the home. Before we provide appropriate activities and entertainment for our loved ones who have dementia, we must ensure their safety. People with most forms of dementia are prone to accidents and personal injury. While you are caring for a person with Alzheimer’s or dementia in your home, or in his home, it is important to be aware of the risks and know ways to lessen them. Open flames, obstructions that could cause tripping and falling, household cleaners that are poison, medications, and wandering are among the many things you should be aware of when preparing your home to care for a person with dementia.
Establish and maintain a daily routine. A predictable structure makes it easier for both caregiver and care-receiver, and ensures that those elements necessary to proper care do not get overlooked. Whenever possible the routine should include:
- Activities of daily living — As the disease progresses, you will need to help more and more with the seemingly simple activities of daily living (ADLs), with hygiene and personal care, meals, toileting, and the other activities that make up this category. Help with these activities will almost certainly take up more of the day as the condition progresses.
- Sensory activities — Sensory stimulation is brain stimulation, so sensory stimulation is an important part of prolonging cognitive functioning.There is increasing clinical evidence that appropriate sensory stimulation reduces anxiety and improves the quality of interactions with care providers.
- Cognitive stimulation — This can come in many forms, most of which are enjoyable and entertaining. Games, puzzles and toys are some of our favorite. See more ideas in Alternative Therapy. Activities that stimulate the brain can slow down the progression of dementia a little, but a little is better than nothing. Such activities are also effective against apathy, aggression, anxiety and agitation that are common.
- Social activity — Socialization is an important part of reality orientation. People with Alzheimer’s disease tend to become withdrawn. As they lose confidence, they avoid contact with others; provide as much opportunity for social interaction as possible.
- Physical activity — Exercise is important to us all, especially as we grow older. To maintain our strength and flexibility, it is crucial to keep active. Incorporate walking, stretching, and light lifting into the daily routine. Pay particular attention to the hands. The longer the hands remain strong and flexible, the easier the routine activities of daily living will be for the person who has Alzheimer’s. Physical activity also increases blood flow throughout the body, and that can help to slow the effects of the disease on the brain. We have a good selection of exercise videos (DVD) that are created specifically for mobility impaired individuals; many of the exercises are done while sitting.
- A schedule that contains as much of the above list each day as possible will improve the quality of life for the one you are caring for, and in turn will provide a better quality of life for you. Practice sympathy. As difficult as your role as Alzheimer’s caregiver will be at times, it is minor when compared to the obstacles and the uncertainties and the fears of the person for whom you are caring. Many who suffer from Alzheimer’s and dementia are aware that their faculties and abilities are slipping away. What they want most is to feel needed and to know that they can still be helpful and productive members of the family or community. Relaxation and entertainment — It is important to schedule some time every day to do nothing in particular, to get away from the concerns of the day. This is true for both of you. Relaxation time might include a nap, especially if your loved one with dementia has trouble with sleeping, a common symptom. Music, movies, old classic television programs that they remember are all relaxing as well as stimulating.
You are Caring for Two
As an Alzheimer’s caregiver, or as the care partner of someone with any other debilitating disease or condition, you are responsible for the health and well-being of two people. To do your best job of caring for another person, it is important that you maintain your own physical and emotional health. It is likely that the one you are caring for is your mother or father, or some other loved one. The emotional component of caring for another person, especially a loved one, makes the task even more challenging. You cannot do your best as a caregiver if you are exhausted, irritated, burned out.
If you are the primary caregiver for a person who has Alzheimer’s disease or another form of dementia, there are many people you can go to for help and support, including medical professionals, clergy or a spiritual advisor. You are likely to get the most meaningful and welcome support from your family and friends. There are also a number of respite care alternatives available to most people.
Professional respite care for Alzheimer’s comes in two basic flavors, in home respite care and adult day services. Both are designed, at least in part, to give you a respite from your daily responsibilities. Both of these services often provide bathing and other hygienic and personal services, help with Activities of Daily Living, as well as other specialized services. Respite care also gives your loved one a respite from you, a chance to be in a different setting with new people who understand her situation. Scheduling is also flexible. You can use the service every day of the week, or just one or two days.
- In-Home Care
There is a growing number of in home care providers; many of them are franchised, and this can be good for you. A franchiser should supply at least a modicum of training as well as provide a standard of care and hold the franchisee to that standard. It also makes qualified care easier to find. You should still do your homework. Try to get recommendations from others who have used the service. Talk to the supervisor and to the individual(s) who will be providing the care. Most importantly, everyone who will be interacting with your loved one should have a thorough understanding of the special needs of a person who has dementia.
- Adult Day Services
Formerly known as, and sometimes still referred to, by the less than agreeable term, “Adult Day Care”, Adult Day services provide a safe environment for adults who need special care, every now-and-then or on an ongoing or daily basis. According to national statistics, 70% to 80% of people enrolled in this type of respite care have dementia. The staff will be trained to care for people in this group, but you should talk to the administrator about any particular needs or quirks your loved one has. The more they know about him or her, the better able they will be to provide the best care. The more you know about the center you are considering, the more likely you will be to make a good choice.
- Residential Care
Many extended care residences, assisted living, for example, offer an option of an overnight stay, or even one lasting several weeks. This option gives you an opportunity to spend a weekend with friends and family, catch up on some business or house work, or even to take a well-deserved vacation. The trained professional staff will ensure your loved one is well cared for. An extended stay in residential care may be a way to ease into a permanent move.
- Other Respite Care
Less formal respite care is also available for most of us. For example, other family members and friends can share your responsibilities from time to time. If someone ever offers this kind of help, remember that offer, and take them up on it from time to time!
Professional Residential Care
You may eventually have to find a residential facility for your loved one with Alzheimer’s or dementia. Professional residential care is the next step for you and your situation; it is not a failure on your part. (This is important and bears repeating) It is not a failure on your part! At this time, it is likely the best move for him, for his safety and well being. The professional care, the directed and personalized activities, and the social setting is more than most people can provide at home.
Failure comes in not visiting, frequently, your loved one once he or she is in a residential community. You wouldn’t be so neglectful, but some people are. One excuse we hear often is, “It’s not important. Mom doesn’t remember that I was there anyway.”
If you hear anyone using this (or any) excuse for not visiting a friend or family member who is in an Alzheimer’s care facility, send them to this Website immediately!!! (And it wouldn’t hurt to scold them a little.) What is important is that your loved one is enjoying the moment, that he or she feels useful and cared about right now. I feel that a person afflicted with dementia, even if they cannot recall an event or an experience, does remember at some level.
Every single time we would have a ‘foot bath’, Bernice would chat about the ‘smart’ person who invented this machine. All the things happening at once; she was very taken just by ‘watching’ the water whirl around and the ‘hum’ of the machine. And every time, she not only enjoyed it, but it always relaxed her. Every time was a ‘new’ experience for her; she forgot that we had done it before; often stating “I wondered what ‘that thing’ was that sits in my bathroom! How wonderful!!!”
The above account was written by Kate, one of the admirable people who has cared for Bernice since the time she was diagnosed with Alzheimer’s disease. It is instructive on many levels. The ‘footbath‘ is a portable unit that mimics the more professional models used by pedicurists and podiatrists. It swirls and vibrates and massages the feet. That’s the “all the things happening at once” part.
Watching all of this happen at the same time that it is massaging her feet makes it a multi-sensory experience, and a cognitive one as well, causing Bernice to think about how it works, and the things it is doing “all at once.” Perhaps most enlightening: Kate made a point to say that she didn’t remember from one time to the next that she had used this “machine,” but she always enjoyed it, and it relaxed her. It is the experience, not the memory of the experience that is crucial.
- Rachel Mahoney, B.Sc. Hons, Ciaran Regan, M.B., Ch.B., MRCPsych, Cornelius Katona, M.D., FRCPsych, Gill Livingston, M.D.; Anxiety and Depression in Family Caregivers of People With Alzheimer Disease: The LASER-AD Study. International Journal of Geriatric Psychiatry, September 2005,Volume 13, Issue 9, Pages 795–801.
- Else Lykkeslet, PhD, RN Eva Gjengedal, PhD, RN Torill Skrondal, MS, RN and May-Britt Storjord, BS, RN; Sensory stimulation—A way of creating mutual relations in dementia care. Int J Qual Stud Health Well-being. 2014; 9: 10.3402/qhw.v9.23888.
- H. Lavretsky, E.S. Epel P. Siddarth, N., Nazarian, N. St. Cyr, D.S. Khalsa, J. Lin, E. Blackburn, M.R. Irwin; A pilot study of yogic meditation for family dementia caregivers with depressive symptoms: effects on mental health, cognition, and telomerase activity. International Journal of Geriatric Psychiatry, Volume28, Issue1, January 2013, Pages 57-65.
- Lynn C. Waelde Larry Thompson Dolores Gallagher‐Thompson; A pilot study of a yoga and meditation intervention for dementia caregiver stress. Journal of Clinical Psychiatry, Volume60, Issue6, June 2004, Pages 677-687.
Related Research for the Alzheimer’s Caregiver: Effects of Caring on Care Providers
The report¹ cited to the left is one of many, going back decades, that ascribe a heightened incidence of anxiety and depression to those who provide dementia care, whether in a professional or a family setting. Unfortunately, most of these studies stopped at the reporting stage without giving much in the way of advise for living with this phenomenon.
More recently a number of investigations have attributed a decrease in the severity of these symptoms in care providers to various forms of meditation.
Another study4 found meditation to be a beneficial therapeutic intervention for people with cognitive impairment, including those at risk for Alzheimer’s disease. This group of researchers found that:
..meditation may offer considerable promise as a safe and cost-effective intervention for reducing stress and for improving cognition, mood, sleep, and related outcomes in adults with or at risk for cognitive impairment.
And they conclude:
If future studies show meditation to be effective in reducing stress and improving cognition and related outcomes in adults at risk for AD, it may offer a novel, safe, and low-cost approach to preventing or slowing cognitive decline in this population, and ultimately help reduce the significant health and economic burden associated with AD.
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