The Three Stages Of Dementia
After dementia is diagnosed, it usually follows a three-stage, downward trajectory.
In mild dementia, people may have difficulty remembering words and names, learning and remembering new information, and planning and managing complicated activities such as driving. They may also be experiencing sadness, anxiety, loss of interest in once pleasurable activities, and other symptoms of major depression.
In moderate dementia, judgment, physical function, and sensory processing are typically affected. This can cause problems with personal hygiene, inappropriate language, and wandering. This stage — when your loved one is able to get around but has poor judgment — is physically and emotionally challenging for the caregiver.
“My dad went from being Mr. Nice Guy to Mr. Obsessed. And things were always worse at night. He was energized and I was physically exhausted,” says Robert Matsuda, a Los Angeles musician who worked full-time and cared for his father with Alzheimer’s Disease for three years before recently placing him in a nursing home.
As a patient moves from mild to moderate dementia, some home modifications that may include removal of throw rugs, installation of locks and safety latches, and the addition of a commode in the bedroom often need to be made.
This is also the time when the palliative care team should be brought in to support the caregiver and help manage behaviors.
Keep Your Mind Active
An active mind may help lower the risk of dementia, so keep challenging yourself. Some examples would be:
- study something new, like a new language
- do puzzles and play games
- read challenging books
- learn to read music, take up an instrument, or start writing
- stay socially engaged: keep in touch with others or join group activities
Tips For Caregivers: Taking Care Of Yourself
Being a caregiver can be extremely rewarding, but it can also be overwhelming. Caring for a person with Alzheimer’s or a related dementia takes time and effort. It can feel lonely and frustrating. You might even feel angry, which could be a sign you are trying to take on too much. It is important to find time to take care of yourself. Here are some tips that may offer some relief:
- Ask for help when you need it. This could mean asking family members and friends to help or reaching out to for additional care needs.
- Eat nutritious foods, which can help keep you healthy and active for longer.
- Join a caregiver’s support group online or in person. Meeting other caregivers will give you a chance to share stories and ideas and can help keep you from feeling isolated.
- Take breaks each day. Try making a cup of tea or calling a friend.
- Spend time with friends and keep up with hobbies.
- Get exercise as often as you can. Try doing yoga or going for a walk.
- Try practicing meditation. Research suggests that practicing meditation may reduce blood pressure, anxiety and depression, and insomnia.
- Consider seeking help from mental health professionals to help you cope with stress and anxiety. Talk with your doctor about finding treatment.
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Safeguarding People With Dementia
The enormity of the challenge of helping people to live well with dementia can be gauged by public attitudes to a condition many regard as the beast. A survey carried out by MORI in 2010 showed that one in three people in the UK are uncomfortable around people with dementia. The survey also showed that more than 50 per cent of people do not know enough about dementia to help someone who has it.
The findings were revealed on the same day as a new national awareness campaign was launched to educate the public about the condition and demonstrate the simple things that everyone can do to help people live with dementia.
It is difficult to come to terms with the mindset of someone who has dementia and how their attitude to managing money can change. They can become very forgetful as well as overly trusting, which can lead to increased vulnerability to abuse.
A carer quoted in the Alzheimers Societys 2011 report, Short changed: Protecting people with dementia from financial abuse
The Living Well campaign promoted heavily on television, radio, the internet and newspapers featured people with dementia, including Peter Dunlop, a former consultant obstetrician and gynaecologist.
This feature emphasises the importance of treating a person with dementia with dignity, maintaining their human rights and ensuring that appropriate safeguards are put in place to protect them in their home and from abuse.
Keep The Commode Clean And Out Of The Way
Perhaps your loved one’s bedroom is on the main floor of your home. If a friend is coming to visit, be sure to clean the portable commode and move it out of the mainline of sight. This helps protect the dignity of your loved one since others don’t need to know that they need assistance with using the toilet or have problems with incontinence.
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Do Try To Be Forgiving And Patient
Do not forget that dementia is the condition that results in irrational behavior and causes dementia sufferers to act the way they do. The patients demand plenty of patience and forgiveness from the people looking after them. Have the heart to let things go instead of carrying grudges around for something that the patient may not be in control of.
Legal Financial And Health Care Planning Documents
Families beginning the legal planning process should discuss their approach, what they want to happen, and which legal documents theyll need. Depending on the family situation and the applicable state laws, a lawyer may introduce a variety of documents to assist in this process, including documents that communicate:
- Health care wishes of someone who can no longer make health care decisions.
- Financial management and estate plan wishes of someone who can no longer make financial decisions.
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Emergencies: What To Do If Your Loved One Wanders
If your efforts to prevent wandering havenât worked and your loved one has gone off, what should you do? Your natural reaction will probably be to run outside and frantically search in any direction.
But experts say the first thing you should do is call 911 to alert authorities. If your loved one is registered with organizations like Project Lifesaver or the Alzheimerâs Association Safe Return program, you can call them, too. Once youâve done that, you can start looking yourself.
Geraldine Dawson, PhD, chief science officer, Autism Speaks research professor, Department of Psychiatry, University of North Carolina at Chapel Hill.
Beth Kallmyer, director of client services for the national office, Alzheimer’s Association, Chicago.
Alzheimerâs Association: âMedicAlert and Safe Return,â âWandering.â
AlzOnline: âWandering and Dementia.â
Down Syndrome Association of Queensland Inc: âStrategies for Children with Down Syndrome Who Wander.â
National Sleep Foundation: âSleep and Alzheimerâs Disease.â
Pathfinders for Autism: âPlan Your Response to an Autism Emergency.â
Project Lifesaver International: âHow it works.â
What Are Some Other Typical Dementia Behaviors
In addition to aggression, confusion, sleep problems and wandering, symptoms of dementia can also include delusions, hallucinations, paranoia, depression, apathy and sexual inappropriateness. And, behavioral dementia symptoms tend to occur more frequently as the dementia progresses.
Up to 90% of patients have one or more of these symptoms during the course of their disease, studies show. It is important to discuss all dementia symptoms with your loved ones physician to rule out or treat any medical conditions that could be causing the behavior.
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How To Communicate With Someone Who Has Dementia
As dementia progresses, it affects peoples ability to express themselves so you may need to learn new ways to understand and communicate with the person you care for. Here are some tips:
If youre struggling with unusual or challenging behaviour, speak to the persons GP to get a referral to your community mental health team. The Alzheimer Societys factsheet Aggressive behaviour has more useful information including how to react, working out triggers, and dealing with your own feelings.
It’s worth bearing in mind that distress and confusion may be caused by other health needs than dementia. Always discuss any concerns with the person’s GP so they can check for physical causes of symptoms.
High Blood Pressure And Dementia Risk
High blood pressure can cause blood clots in arteries, blocking blood flow to the brain. Stroke and the loss of brain cells may follow, and the brain could subsequently shrink.
People with high blood pressure in midlife are more likely to develop dementia later in life .
Heres what you can do:Make sure you know your blood pressure if you are 40, Livingston said. The Lancet team recommended aiming for a systolic blood pressure the pressure of the blood against artery walls as the heart beats of 130mm Hg or less in midlife, though Larson cautioned against reaching an overly low blood pressure.
Experts say managing stress and sleeping well, maintaining a stable weight and eating a healthy diet of less sugary foods, exercising regularly and refraining from smoking can help control blood pressure.
Read more about past research on the link between hypertension and dementia, and insights on how hypertensive treatment may reduce risk of cognitive decline
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Safeguarding And People With Dementia
Safeguarding can be applicable to a wide range of adults, often these adults are identified as vulnerable or at risk. This can include people with dementia, people with learning disabilities, people with sensory or physical disabilities and includes carers.
People with dementia will have cognitive symptoms that may make them more at risk of abuse or neglect. They may experience:
- Memory loss
- Problems with concentrating, planning and organising including making decisions and problem solving
- Communication difficulties
- Difficulties with orientation
All of these can make it harder for the person to protect themselves.
Carers may also be at risk of neglect and abuse especially if they are overburdened, isolated, lonely or experiencing severe stress. For example, a carer finding a situation difficult which may result in them not looking after themselves or impact on the care they are providing to the person they care for.
Safety Inside The Home For People With Dementia
- Arrange furniture simply and consistently and keep the environment uncluttered.
- Remove loose rugs and seal carpet edges that may be safety hazards.
- Install night-lights in the hallways and in the toilet that may be useful to help a person find their way to the bathroom at night.
- Dispose of, or safely store, all old medications and hazardous materials such as kerosene.
- Remove electric blankets and hot water bottles that can be a safety hazard for a person with dementia.
- Install safety switches, which are now recommended, in homes.
- Use hot water jugs and other appliances with automatic cut-off mechanisms.
- Replace more dangerous forms of heating, such as bar radiators, with safer heating options, such as column heaters.
- Check appliances like heaters and toasters to make sure they do not present any safety hazards.
- Replace long electrical cords on appliances with coiled or retractable cords.
- Consider thermostats to control the temperature of water that comes out of the hot water taps.
- Check that smoke detectors are fully functional a person with dementia may need someone else to check the battery and make sure the alarm is loud enough.
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Do Offer Assurance Often
Many times, people with dementia may experience feelings of isolation, fear, loneliness or confusion. They may not be able to express this in the right way and thus may wander off or keep saying that they want to go back home, especially if they are in a senior living facility. This is not the time to shut them out. Its a good idea to assure them that they are safe and in a good place.
If you are close enough, provide a comforting hug every once in a while and remind them that they are in a place that has their best interest at heart. Where possible, engage in exercise or take a walk as even light physical activity may help to reduce agitation, restlessness and anxiety.
How Can I Support Someone As Their Dementia Progresses
As a person’s dementia reaches its later stages, they become increasingly dependent on others for their care.
They may have severe memory loss and no longer recognise those close to them. They may lose weight , lose their ability to walk, become incontinent, and behave in unusual ways.
Not everyone will show all these signs, and some people may show them earlier on in the illness.
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Do Not Shy Away From Asking For Help
No one may have all the answers especially when it comes to taking care of a person with dementia. Try doing research on how their behavior changes and what needs to be done to help them live their lives without too many complications. Hire help when it becomes too much as it also ensures that you do not become too frustrated or drained. When you have multiple family members who can help, ask everyone to pitch in and look after the patient so that you can get some personal space to breathe and re-energize when it is your time to look after the patient. When you feel like you can no longer look after your loved one at your own home, it may be time to consider assisted living. In such case, look into dementia care homes that can provide specially trained professionals.
Create A Health Care Directive
Estate planning lawyer Somita Basu recommends families with a loved one who has dementia make sure a valid, recent, notarized Advanced Health Care Directive and HIPAA Waiver is in place for your loved one.
Someone with Alzheimers will reach a point where they cant make informed decisions about their health care. You want to sit down with your loved one now to discuss the potential health issues that may arise and what their choices for treatment would be in each case. That way, not only will you be confident that youre making the right decision if those situations do occur later, but you can put them into a legally binding living will.
Even with a living will in place, there are potential health care issues that can arise once your loved ones dementia sets in that wont be covered. For those, you want to also make sure your advanced health care directive includes providing a medical power of attorney to someone your loved one trusts to make those decisions for them.
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Advance Planning Advice For People With Dementia
Start discussions early. The rate of decline differs for each person with dementia, and his or her ability to be involved in planning will decline over time. People in the early stages of the disease may be able to understand the issues, but they may also be defensive, frustrated, and/or emotionally unable to deal with difficult questions. The person may even be in denial or not ready to face their diagnosis. This is normal. Be patient and seek outside help from a lawyer or geriatric care manager if needed. Remember that not all people are diagnosed at an early stage. Decision-making may already be difficult by the time the person with dementia is diagnosed.
Gather important papers. When an emergency arises or when the person with dementia can no longer manage their own affairs, family members or a proxy will need access to important papers, such as a living will or financial documents. To make sure the wishes of the person with dementia are followed, put important papers in a secure place and provide copies to family members or another trusted person. A lawyer can keep a set of the papers as well.
Review plans over time. Changes in personal situations such as a divorce, relocation, or death in the family and in state laws can affect how legal documents are prepared and maintained. Review plans regularly, and update documents as needed.
Do Keep Eye Contact When Speaking
Communicating with a dementia patient requires a lot of patience, especially during later stages of dementia. It is vital to ensure that you talk in a place that has good lighting, a place that is quiet and without too many distractions. Do not try and stand over the person you are talking to, but rather try to be at their level and keep eye contact at all times. Take care to make sure that body language is relaxed and open. Prepare to spend quality time with the person so that they do not feel rushed or like they are a bother.
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Nutrition: Healthy Eating Tips To Overcome Dementia Challenges
You should be concerned with your loved ones nutritional intake. Getting the right nutrients is key to maintaining health, and deficiencies can contribute to fatigue and other symptoms that can impact their well-being. However, people with dementia may have challenges with eating, such as difficulties swallowing, making it even more difficult for caregivers to ensure proper dietary intake.
One of the biggest issues facing people with dementia is dehydration. They may be unable to recognize that theyre thirsty, or simply forget to drink enough water. But dehydration can cause headaches, increased confusion, and other issues such as constipation or a urinary tract infection, which can exacerbate the symptoms of dementia. Make sure that your loved one can easily access water when needed, or keep a pitcher or glass of water next to their bed or chair.
Weight loss is another common concern for people with dementia. Dementia-related symptoms and challenges that may contribute to weight loss include:
- Difficulty recognizing that theyre hungry
- Difficulty preparing meals