Information & Resources
Your parent has been Scammed!
It is the dreaded thought no-one wants to have when it comes to their vulnerable, elderly parents.
Home, just like for all of us, is where an elderly person should feel the safest.
Scammers or fraudsters however, have found ingenious ways to invade the secure lives of elderly people by targeting their post, the internet and telephone, as well as unsecured documents too taking advantage of their trusting and good natures.
Sadly, the number of incidents of scams involving older people is increasing. Many more elderly people are unbeknown, finding themselves at risk which threatens to strip them of their assets, their independence and their trust.
Our mission is to help raise awareness of the risks facing our elderly people so that we can do as much as we can to prevent these distressing and devastating crimes from happening in the first place. That’s why the Home Instead Senior Care network has launched its Senior Fraud Protection public education programme and created a free, Senior Fraud Protection Toolkit to help you and your loved ones keep safe.
Please click on the link below to download our free Toolkit:
Did you know?
It is thought that around 7 out of 10 older people in Britain are attempted to be targeted by Fraudsters every month. That amounts to 6.6 million people!
£1.5billion of elderly people’s money was lost to fraud in 2012 in the UK
- Devastating Emotional Distress
- Inability to recover financially
- Loss of independence, both emotionally and financially
- Shame and embarrassment of being conned
- Poor self esteem
- Withdrawal from usual social interactions
- Low, self confidence
- Vastly reduced quality of life
Some of the ‘typical’ scams….
- Microsoft imitators
- Fake charities
- Telephone Preference Service cons
- Direct threats of being arrested – messages on answerphones
- Million Pound wins
- Inheritance cans
- Clairvoyant scams
- Lottery and prize draw scams
- Identity theft
- Courier scams
- Catalogue scams
- Friend in need
- Medical emergency
….. and, sadly, many more….
What should you do if you’ve been scammed?
Mass Marketing / Mail Scams
Send / Forward actual letters to Gavin Morrigan, Suite 5A, Surtees Business Centre, Bowesfield Lane, Stockton-on-Tees, TS18 3HP. These will then be reported to the National Trading Standards Scams Team (NTSS) via the bespoke Home Instead Senior Care scam reporting website. Information about our association with the NTSS is contained in the link below:
Fraud: Report to Action Fraud.
Telephone: 0300 123 2040
Obtain a copy of the police report, or at least the crime report number, in order to support your potential claim with an insurance company, if covered.
Think Jessica is a national charity which supports fraud victims and their families. Visit their website for more information:
How to keep safe
- Encourage, or preferably assist elderly people to join the Telephone and Mail Preference Services
- Educate the elderly who use the internet about the dangers emails and phishing tactics
- Be aware and watch out for changes in daily habits or other unusual activities, especially financial.
- Be alert to any ‘new’ friends or changes in interest of other ‘known’ associates …
- Ensure older people know that they must never disclose any personal information on a telephone call that they did not initiate
- Never disclose their PIN to anybody
- If they want to donate to a charity, make sure it has a registered number – and check it!
- Shred documents that contain sensitive or personal information
- Do not call competition hotlines
Our Guide to Coping with Alzheimer’s & Dementia below addresses some of the most common questions people have when needing to face up to the situation that a loved one has dementia.
We also have a very useful handout called “Types of Dementia, Symptoms and Treatments” which as the title suggests gives more in-depth information about what to expect with each type of dementia diagnosis. Please look at the next section on this 'Information & Resources' section of our website for the full document or alternatively, contact Jo on the office number below.
We also have some good training tutorial videos on our website under the ‘Our Care Services’ tab or click on this link https://www.homeinstead.co.uk/Online_Training_Tutorials.do
For any further assistance please contact Jo Page, Registered Care Manager for Home Instead Senior Care (Cleveland) on 01642 309650 or email her at firstname.lastname@example.org
- What is the difference between Alzheimer's disease & dementia?
- What are the stages of Alzheimer's and dementia?
- Is Alzheimer's inherited?
- How do I talk to Dad about his diagnosis?
- How can I turn a NO into a YES?
- What are the other types of dementia?
- Why is Mum always angry with me?
- How do I talk to Dad about his dementia and driving?
- Do the memory drugs work?
- How are depression and dementia related?
- How do I deal with delusions?
- How can I help someone in late stage dementia?
- How do I manage Mum's wandering?
- What is the difference between Alzheimer's disease & dementia?
The word “dementia” is an umbrella term for anything that can cause issues with brain functioning such as confusion, memory loss, or loss of problem solving ability. Whilst Alzheimer’s disease is the most common form of dementia in older persons, there are many more varieties, including Lewy Body dementia, vascular dementia or frontal lobe dementia.
Families often say that they struggle to understand what doctors mean by dementia and are sometimes left confused. That’s why it’s important to ask the doctor what type of dementia is being diagnosed. David Troxel, a dementia expert who worked with Home Instead Senior Care to develop its own Alzheimer’s and Other Dementias Training Programme, emphasises that the medical professional should be able to tell you the specific diagnosis and the reason for that diagnosis, just like the waiter should be able to tell you the soup of the day and how that one is different from other soups.
It’s important to know the type of dementia being diagnosed because different types of dementias have different characteristics and manifestations and family members need to know what to expect. People with frontal lobe dementia for example often undergo profound personality changes and can become quite disinhibited and outrageous. People with Lewy Body dementia may have profound visual hallucinations, including talking to ‘little people in the room’ or seeing animals that are not really present. It can be extremely helpful and reassuring for families to know that a particular behaviour is part of the disease process, not just ‘bad behaviour or the person choosing to be cantankerous.
In addition, different dementias may call for different medicines. Individuals with pure frontal lobe dementia will often not do very well on the more typical memory medications like Exelon, Aricept and Razadyne, but they may respond to an anti-depressant instead. People with Lewy Body dementia seem to be very sensitive to mood-altering medications like anti-psychotics. Bearing this in mind, we are reminded of an old nursing phrase which says, “start low and go slow” when giving psychotropic medications to someone with Lewy Body dementia.
Finally, when the doctor gives you a specific diagnosis it’s a positive sign that you’ve seen a medical provider who understands the contemporary best practices surrounding diagnosis. You can feel that you and your family member are in good hands.
Likewise, other professionals you may work involved with care for your loved one, such as carers should be trained to understand the distinctions between various dementias. “Our CAREGivers are trained to understand the differences between Alzheimer’s disease and other forms of dementia. We want our client’s families to know that we are here for them no matter which dementia diagnosis they face and we know how to better handle each condition.
CAREGivers can form a care team with your family member’s doctors, pharmacists, other care providers and support networks focussing on providing the best possible care. That focus also needs to include an accurate understanding of the diagnosis, its symptoms, and its possible treatments. “Until we can find a cure, the best approach to any of these dementias is engagement, activities, communication and loving care,” says Michelle Fairless, owner of the Home Instead Senior Care Cleveland office.
- What are the stages of Alzheimer's and dementia?
Alzheimer’s disease and the other dementias are usually slow and progressive illnesses. The average length of life after a diagnosis of Alzheimer’s is eight years, although many people live much longer.
While there are different theories and views of staging, many senior care professionals (including David Troxel, co-originator of the Best Friends Approach to Alzheimer’s care) believe that understanding three basic stages can help families prepare for the caregiving journey.
- Early dementia
In this stage, people with Alzheimer’s retain some insight into their situation, but are getting more and more confused and forgetful. They may begin to lose language skills, have trouble handling money and paying bills, forget once-familiar tasks and have some personality changes.
One woman David worked with said her mother was “fighting the battle” during this stage. She knew what was happening to her and was fighting against it in order to keep her independence.
During this stage the family found it hard to manage issues around driving and money management, but with honest and caring discussion the mum finally accepted their help.
- Middle dementia
People in early-stage dementia can retain enough cognitive function to fool family and friends about their condition. But, sadly, the game is up in stage two, marked by significant memory loss and confusion. Dad may forget or not recognise family and friends, may repeat himself often, and have problems sequencing tasks, for example putting on clothes in the wrong order. He starts to lose independence. Sadly again, it is no longer safe for him to live alone and manage his own affairs.
“Dad stopped washing, shaving and wearing clean clothes during this time,” his son remembers. “He became apathetic, withdrawn and seemed depressed. Which wasn’t like Dad at all.”
It is small surprise that this is the usual point at which most families intervene and seek help for their loved one. They may arrange a power of attorney in order to manage finances, and turn to an adult day centre (if there are any locally), or more likely engage a specialist Care at Home elderly care provider to help them stay safely at home which is usually where most people continue to wish to reside; or residential care accommodation, during this stage of the dementia.
Socialisation and support are important at every stage of the Alzheimer’s journey, though they are key interventions during middle stage dementia. Structuring the day, arranging activities and preventing isolation are very important goals - goals that Care at Home workers who have completed the Home Instead Senior Care network’s Alzheimer’s and other Dementia support programme are able to help clients achieve. Besides offering daily assistance with dressing, washing, meal preparation and other tasks, these trained CAREGivers know how to plan activities both they and their clients can enjoy together whilst having fun in the process.
- Late dementia
In many ways, Alzheimer’s can be considered a fatal illness. As the illness progresses, the person becomes more prone to falls and infection. Other complications which become more apparent include for example the swallowing reflex declining too, making the person vulnerable to aspiration pneumonia. Another example - while the person may have experienced some incontinence, now he or she may lose full control of bladder and bowels.
Caregiving becomes quite profound and focussed on physical care and well-being. Although the person may not recognise family or friends, it is still very important to continue expressing love and affection. Violence and other more problematic behaviours can become more prevalent as inner anxiety and frustrations come to the surface more readily, quite a shock in many people who’s general nature and manners would, for their most lives, have been quite the opposite! There’s still a person inside who needs dignity, respect and comfort. Of great help during this final period can be hospice services, which can provide excellent medical, spiritual and complement quality Home Care services.
Companions along the way
Having “supportive companions are important no matter where your family member is on this long journey,” says David “Building a strong network of CAREGivers, support groups, and friends can help a family prepare for and address needs and challenges at every stage of the Alzheimer’s life cycle.”
- The Big Question? Is Alzheimer's disease inherited?
For Carers and family members, this question looms large. Forgotten a familiar name or appointment? Made a mistake in a bank account? Burnt something on the stove?.... you ask yourself the question… “Is this it? Has my Alzheimer’s started?!”
Don’t panic! While some forms of Alzheimer’s may be more likely to be inherited than others, dementia expert David Troxel thinks our stress-filled, multi-tasking culture almost encourages forgetfulness: “We depend upon our smart phones to remind us of appointments, our mobile phones are automatically programmed to dial a number, and our GPS systems take us where we want to go without much thinking.”
While many people are becoming a bit more forgetful because they aren’t exercising their brains, David affirms that periodic memory lapses aren’t usually a sign of early Alzheimer’s, particularly in younger persons.
So, are you more likely to get Alzheimer’s if one of your parents have the disease? Here is a summary of the current thinking about the inheritability of Alzheimer’s.
- Early-onset Alzheimer’s may be more inheritable
Alzheimer’s disease does run in some families, particularly in early onset cases in which someone gets the disease well before the age of 65. Fortunately, these devastating cases represent less than 5 percent of all diagnoses. If you have a parent or sibling in this situation, you may want to decide to have an evaluation. You may also want to undergo genetic testing yourself to better understand your family situation.
- Later-onset Alzheimer’s is usually less inheritable
If you have a relative whose Alzheimer’s disease begins sometime well after the age of 65, you probably only have a slightly increased risk, if any. This is good news for most family members, since late-onset dementia is by far the most common form of the disease. Families will often express concern that many of their elderly relatives experienced Alzheimer’s disease. They worry that it must run in the family since “four of my five uncles had dementia.” David offers some reassuring words of advice, “Remember, almost half of all elderly people will develop dementia. This family’s experience might just reflect the average variations in percentages that impact on us all.”
- Assessing your risk
If you still want to assess your risk, you can talk with your doctor about genetic testing. The most common test looks at a gene called APOE (apolipoprotein E) found on Chromosome 29. You receive one gene from your mother and one from your father. The test reveals whether you have an APOE 2, 3 or 4 from your mother and your father. A 2/2 combination seems to actually protect the brain; an APOE 4/4 greatly increases your risk.
Most medical professionals discourage blanket genetic testing, at least in its current form. An APOE test demonstrates risk but is not definitive. Also, it will not tell you when you will get Alzheimer’s—at 70, 80 or 95. This makes the information hard to use on a practical basis.
While the evidence is not absolute, getting plenty of exercise, refraining from smoking, controlling weight, eating a heart-friendly diet, and staying socially and intellectually active may help delay the onset of Alzheimer’s disease, or may even prevent it. If you have experienced Alzheimer’s disease in your family, take these positive wellness steps. They cannot hurt you but may help quite a bit (and in other ways too)!
- How do I talk to Dad about his diagnosis?
“Whatever you do, don’t tell Dad about his Alzheimer’s disease.”
Doctors will often hear this line. The families who say it are afraid that the truth will devastate their loved one and lead to hopelessness and depression.
Some doctors may comply, but most believe it’s a patient’s right to be fully informed about his or her situation. Even patients with dementia deserve to hear the truth. Why shouldn’t they? “Plain, truthful discussion allows everyone to come together and show support, giving lots of loving help and making a game plan for really effective and loving care,” says Michelle Fairless, owner of the Home Instead Senior Care Cleveland office that has helped many families coping with Alzheimer’s.
Consider Margaret’s experience: Margaret’s family was so worried about her reaction to her diagnosis of Alzheimer’s disease that they phoned the doctor and left frantic voice messages insisting he not tell Margaret anything. The doctor ignored their requests and explained it fully for her. Her response? “I knew it! I’ve seen those ads on television! What can we do about it?”
Like many people, Margaret found it comforting to finally understand the truth about her memory loss. Whilst many families dread this moment, in other cases it’s almost a non-event for the person suffering from dementia. He or she may already know something is wrong. Others may be protected from the bad news by their forgetfulness, or not fully understand or retain the information.
Keeping a diagnosis secret makes it very hard to formulate a game plan for success. How can you get to the Alzheimer’s education workshop, support group or start using helpful services if the diagnosis is not revealed? Starting your family member on a recommended memory care medication or treating depression can be extremely difficult if it’s all being kept a big, dark secret.
If you’re facing the challenge of sharing a dementia diagnosis with a loved one, consider following these steps:
- Learn all you can about dementia so that you can speak to your family member with confidence and answer questions (see below).
- After the doctor has explained the situation, take an upbeat approach. Tell your mum that she is not alone, that many people have this diagnosis, and that there is a lot of life left! If you don’t want to use medical terms like Alzheimer’s disease or dementia straight away, just remind her that the doctor says she has some “memory problems.”
- Answer your loved one’s questions fully, give the truth, but stress the positive—for example, that memory pills may help, and that research continues around the world to find a better treatment or cure.
- Stress that you will travel the journey with your family member and help them cope with the challenges ahead. Your optimism and positive tone will be comforting.
Most importantly, have empathy for the person in your care, and communicate with an upbeat, positive spirit. Provide loving support and engage your loved one in meaningful activities that build their sense of purpose and self-esteem. If the journey starts to become overwhelming for you, consider joining a support group or contact other local expert organisations, such as Home Instead Senior Care, who specialise in providing the home care support you may be requiring. You and your family member do not have to travel this path alone. Travel companions can help you make the most of every day, building rewarding, trusted and assuring relationships along the way.
Home Instead Training Tutorials and links to other useful resources: http://www.homeinstead.co.uk/Online_Training_Tutorials.do
- How can I turn a NO into a YES?
“Whenever I ask dad if he wants to go out for a walk, do some gardening, get some jobs done around the house or take a drive out somewhere, he always declines. I get so frustrated; my new nickname for him is Dr No!”
One of the most common frustrations among family carers is the propensity for people with dementia to say “No!” Loved ones can’t understand why people with dementia so often say no and refuse to do the very things they’ve always done so willingly and eagerly in the past.
The reasons are actually pretty straightforward. Dementia impacts memory, language as well as reasoning. It’s very hard for the person with dementia to understand what we are asking of them. When we are asked to do something we don’t understand or we feel uncomfortable with how do we respond? More than likely…No!
Like the rest of us, people with dementia have the right to say no and they often exercise that right. However, because of their dementia, they often make poor decisions. A good way for family members to approach the ‘no’s’ is to ask themselves, “What would dad have done years ago? Would he have enjoyed the outing? Would he have wanted to be dressed in clean clothes? Would he have wanted me to be this stressed or would he have been willing to get some in home help so I could be sure he is safe and healthy?”
In most cases, the answer is yes. But to turn that ‘no’ into a ‘yes’ when dementia is present, family members and professional CAREGivers have to become leaders and influencers and provide lots of encouragement. At Home Instead Senior Care, we train our Caregivers to try three times, in three different ways, to turn a ‘no’ into a ‘yes’.
Here is an example of how you can use that technique with your own family member:
Let’s say you are trying to get Mum to sit in the garden on a beautiful day….
One: Ask her the way you always have. “Mum, it’s a lovely day out. Let’s go out to the garden to look at the roses.”
Two: Use some information from her life story to make a more personal request. “Mum, let’s go out to the garden and see your roses. I need your advice on how to prune them properly and you are a master gardener!”
Three: Take her hand into your hand and point to the garden (to give her physical prompts) as you say, “Mum, it’s a lovely day out. Let’s go to the garden to look at the roses.” [Pause] “I really appreciate your help in the garden. After we’re done, let’s get some strawberry ice cream.”
This time you are giving her a physical prompt to the desired response and offering your hand for support. Adding another sentence showing that you admire her willingness to help you and offering a favourite reward afterwards both increase your chances of success.
Perhaps this time she says ‘yes’.
Sometimes the stakes are higher than a social visit to the rose garden. Getting Mum to agree to go to the doctor or use at-home services can be a matter of safety, security, and overall health.
David Troxel, co-author of The Best Friends Approach to Alzheimer’s Care, recommends that when you have your family member’s best interests at heart, it is sometimes easier to get forgiveness than permission. You may have to line up services that you need and start them, even without your family member’s initial consent. Once you get the ball rolling, the person with dementia often goes along because at that point, a big decision is not required as it might have been previously when any change may be seen as a potential threat to their feeling of security with the phenomena of someone they don’t know. Once a warm, smiling, friendly person reassures of a lovely relationship to come, often the barriers disappear and acceptance becomes welcome.
If you face resistance when starting in home care services or starting any new routine, stressing that it’s only on a trial basis often helps, or mention that it’s “doctor’s orders.” Mum or Dad may have been a little mad at you for taking them to the doctor, but once it’s over they may soon forget and move past the negative feelings. They key is helping get the person with dementia into a new routine centred on additional home care services. Quite soon they may actually begin to enjoy the socialisation and attention.
Remember, while it may be tough going, with patience and compassion and leading the situation, you can soon learn how to turn that ‘no’ into a welcome ‘yes’.
- What are the other types of dementia?
While Alzheimer's is the most common form of dementia, numerous other dementias, each with a unique set of symptoms, also affect millions of people worldwide.
Approximately 60 percent of all dementia cases are of the Alzheimer’s type and classic symptoms affecting memory, thinking, language and judgment are well known.
Vascular dementia develops when impaired blood flow to parts of the brain deprives cells of oxygen. In one form, a series of very small strokes or “infarcts” block small blood vessels. Individually, these little strokes do not cause major symptoms, but over time their combined effect becomes noticeable, which is one reason why this type of dementia was formerly called “multi-infarct dementia.”
Most of the “memory medications” used to treat the symptoms of Alzheimer’s disease (the cholinesterase inhibitors like Aricept) have also been shown to help individuals with vascular dementia. Lifestyle changes, for example diet, exercise and curtailing addictions such as alcohol and smoking that support good heart health and reduce stroke risk may also be helpful.
Mixed dementia is a common condition in which Alzheimer’s disease and vascular dementia occur at the same time. The treatment is similar to vascular dementia.
Lewy Body dementia is characterised by abnormal deposits of a protein called “Lewy bodies,” after the scientist who first described them.
Symptoms include memory problems, poor judgment, thoughts and confusion similar to Alzheimer’s. What is different is that persons with Lewy Body may have excessive daytime drowsiness, profound visual hallucinations, movement symptoms and a lack of facial expression.
The traditional dementia medications may be helpful; however, people with Lewy Body dementia are often quite sensitive to psychotropic medications.
Parkinson’s disease can sometimes be accompanied by dementia. In fact, dementia occurs in 15-30 percent of people with Parkinson’s disease usually appearing in the later stages of this chronic brain and nervous system disorder. Classic symptoms of Parkinson’s include tremors and shakiness, stiffness, difficulty walking and controlling muscles, lack of facial expression and impaired speech.
Parkinson’s medications help with physical manifestations of the disease, but may have side effects of added confusion
Frontotemporal dementia (often called “frontal-lobe dementia”) is a rare disorder that affects the frontal and the temporal (side) lobes of the brain. Symptoms include a more rapid onset of symptoms than Alzheimer’s disease, as well as changes in personality, judgment, planning and social functioning. Individuals may make rude, obscene or off-colour remarks to family or strangers. They may make unwise decisions about finances or personal matters. This is the only dementia that impacts more men than women. The peak age is 55-65.
There are no current treatments specifically for frontal-lobe dementia. The traditional memory medications, cholinesterase inhibitors such as Aricept, may make this form of dementia worse and are usually not recommended. Antidepressants may be helpful.
Accurate diagnosis is important
A thorough medical examination can usually identify the specific dementia diagnosis. Knowing the diagnosis can help family members better understand and cope with their situation. For example, if a person with frontal-lobe dementia makes upsetting and hurtful remarks, a well-prepared family member may better take the remarks in stride. If a person with Lewy Body dementia is talking to “small people” in the room, a CAREGiver who understands that this is common will know not to overreact and deal with the situation more appropriately.
Staying abreast of new trends in dementia and dementia care is a priority for the Home Instead Senior Care network, says co-founder of Home Instead Senior Care International Lori Hogan. “Knowing about these other dementias will help our CAREGivers come into the home with wisdom and confidence.”
- Why is Mum always angry with me?
We all get angry now and then. We can be angry at a person, like a friend whose persistent lateness makes us too late for a movie. We can be angry at a thing, like an unreliable car that breaks down again and again. We can be angry at ourselves for not sticking to a diet and our resolution to lose a stone before summer!
People with Alzheimer’s disease and the other dementias have good days and bad days too. Yet the memory loss and confusion associated with dementia can trigger bouts of anger that can be distressing to a family member simply trying to do his or her best.
“Some days Mum is so sweet and appreciative, but other days she is angry at me and even hits out,” says one CAREGiver who feels quite frustrated by her mother’s dementia. “Triggers like trying to get her into the shower are easy to understand, but sometimes her dark moods just seem to come out of nowhere. Why doesn’t she know I’m doing my best?”
“Anger is a form of communication,” says Michelle. “The person with dementia may not be able to tell us what they want or need. Anger is one way for them to release their frustration and emotion.”
So, when you’re facing a family member who’s unexpectedly angry, try following these steps:
- Give it a break. Sometimes just pausing and coming back in 5 or 10 minutes works. Try saying, “Mum, I’m so sorry I misunderstood what you wanted for breakfast. I’ll be back in a few minutes to see if I can get it right next time.”
- Keep on the lookout for likely triggers. Think about what happened right before previous outbursts. Can you detect a pattern to avoid in the future? Some people with dementia get very tired in the afternoon, for example, and may get angry if you try to engage them in activities then. In this case try preparing for more activities in the morning and give them a break in the afternoon.
- Watch for pain, illness or someone who may be off-colour. The person with dementia may have toothache, arthritis pain, or simply be sick. Dementia expert David Troxel recommends watching for abrupt changes. “If a normally happy-go-lucky person is suddenly moody and angry, that is usually a good sign that it may be a physical health issue.”
- Bring up a favourite subject from the person’s life story. Talking about the person’s childhood (or whichever former time-zone of their life they may be more fixed to); their favourite foods, or previous experiences can sometimes change a bad mood into a good one and at least switch the subject.
- Apologising is tough, but it’s sometimes the best response to anger—even if it’s not your fault! Saying, “Dad, I’m so sorry that I misunderstood you. I’ll do better next time. I love you” can turn that anger into a smile. Appeasement beats ‘rightfulness’ hands down!
It’s important to share these tips with other professionals you may work with to care for your loved one, says Troxel, who helped develop a training program for Home Instead CAREGivers that equips them to create a positive, happy and pleasant environment through loving support, good communication and a variety of activities. “A therapeutic environment like this tends to bring out the best in people with dementia and can readily reduce incidences of anger.
- How do I talk to Dad about his dementia and driving?
This is one of the most challenging problems for family carers. What do you do when your family member with dementia still insists upon driving his or her car?
“I was a nervous wreck about Dad’s driving,” remembers one family member. “I confronted him, begged him, and argued with him, but to no avail. The more I pushed, the more he pushed back. Because he was marginally legally competent, I couldn’t force him to stop.” Fortunately, after a couple of scary incidents, he made the decision himself that it was time to quit driving.
Others may not be as amenable to changing their habits and giving up their perceived ‘independence’. “My uncle was fine for many months driving around his small town, during the daytime, on a route he knew well,” says Jenny, another family carer. “I hated to be the one to take away his car because it meant so much to him, but we kept on eye on the situation and talked to him about it early on.” In this case, the family eventually insisted that he should only drive with a “co-pilot” who could help him navigate and provide encouraging feedback and support and help avoid incidents or danger.
Alzheimer’s disease and the other dementias tend to be slow and progressive. Early on, the person with symptoms of dementia begins to lose skills and judgment, but they might still retain adequate driving skills.
As dementia progresses though, driving becomess impaired by poor judgment (the person may drive in terrible weather); memory loss (the person may get lost); problems with reasoning and problem solving (the person may be unable to understand road traffic signs or become unfamiliar in a known area) and fatigue (the person may fall asleep). When these factors develop, taking to the wheel makes a driver truly a danger to the public at large and to themselves.
The following tips may be helpful to you when it’s time to talk to a family member about driving and dementia.
- Explain the situation directly and share your feelings of concern and worry, preferably with examples and potential consequences. Sometimes this will work.
- Recognise that your loved one may genuinely worry about losing his or her independence and being cut off from familiar friends and activities. Knowing this, offer pre-planned alternatives like elderly companionship service organisation that includes transportation services, taxis, or rides from other family members.
- When choosing companionship / in-home help, look for organisations who guarantee someone with a valid driver’s license and business insurance. “A well-trained and supportive CAREGiver becomes the life-line for a person with dementia and helps them retain their independence and some part of the person they once were, taking them shopping, on medical appointments or maintaining social contacts with friends and other associates who would welcome being ‘kept in touch with too.’
- Don’t singularly become the bad guy. Encourage them to stop driving because ‘it is the Doctor’s order!’ or the collective wishes of the family as a whole. You can also hire an expert to give an independent driving evaluation and all agree to follow his or her advice.
- When a person becomes quite confused or disabled, drastic steps may be required such as hiding the keys, disabling the car, or removing the car altogether. One family simply told dad that his car was in the shop. He accepted the explanation and the problem was solved!
Most professionals support the basic privileges and rights of people with dementia. Forgetfulness alone is not a reason to strip someone of the right to drive. As a family member, you need to be supportive yet vigilant. When the ability to make good decisions vanishes, it’s time for tough love.
- Do the memory drugs work?
The recommended medical treatment for Alzheimer’s disease and many of the other dementias includes a group of drugs that are often called ‘dementia slowing’ or ‘memory enhancing’ medications. The most prescribed include a group of drugs called cholinesterase inhibitors. These go by the trade names of Aricept, Exelon and Razadyne. These drugs do not stop the underlying progress of dementia, but they often support better thinking and memory. The drugs work by boosting a brain chemical that is essential for healthy thinking and functioning. Another drug called Namenda has different neuroprotective properties but also supports better brain functioning. Most people on Namenda are on one of the three cholinesterase inhibitors and this combination therapy seems to work best.
These four current medications for dementia provide at least, modest benefit. They can temporarily improve symptoms and help a person think better and remain independent longer. Conventional wisdom is that the drugs begin to lose their effectiveness over time. Side effects for these medications are modest and can include gastric / digestive problems, vivid dreams as well as agitation.
One of the challenges of these drugs is that they work better for some people than others. Some people taking the medications have considerably noticeable improvement. They might return to the golf course, gain back skills like operating the washing machine or simply report better memory in general. Others may be benefitting but show no real noticeable effect. In these cases the drug or drugs may be helping them maintain their current levels of functioning; this is still a valuable benefit arresting what could have been a more rapid decline. Equally, there are some people who seem to experience no apparent benefit from these memory medications.
The British Alzheimer’s Society has a short but helpful summary on its website, “Research suggests that between 40 and 70 per cent of people with Alzheimer's disease benefit from cholinesterase inhibitor treatment, but it is not effective for everyone and may improve symptoms only temporarily, between 6 and 12 months in most cases. According to an Alzheimer's Society survey of 4,000 people, those using these treatments often experience improvements in motivation, anxiety levels and confidence, in addition to daily living, memory and thinking.”
The Alzheimer’s Association endorses these medications but encourages families to maintain realistic expectations noting that the medicines won’t cure Alzheimer’s or stop it from progressing but may lessen symptoms for a limited time.
Home Instead dementia care consultant David Troxel recalls a time when there were no medications. “However modest their impact, these memory medications have given hope to millions of persons around the world. That being said we desperately need new and better medicines to help people with dementia.”
A frequently asked question at support groups and in other settings is when to stop using the medications. Many doctors will choose to keep a person with dementia on these medications for a long period of time utilising the theory that insuring for even modest benefits can be better than doing nothing. Other doctors will slowly withdraw patients from these drugs if they and the families perceive that the drugs are no longer having a positive impact, and especially if side effects become more apparent than any gain.
Until we find a truly effective way to prevent, treat or cure Alzheimer’s disease and other dementia David notes that the “treatment” for dementia is socialisation, keeping the person active with exercise, music and engagement with creative activities. “Engaging the person in life as much as possible fights the onset of depression and keeps them operating at the very best that is possible given the illness being experienced.”
- Is depression and dementia related?
As we work to unravel the mysteries of Alzheimer’s disease and other dementia’s, one of the more interesting areas of research is depression and its connection to dementia. It seems to be that depression impacts on people with dementia in at least two different ways. Firstly, individuals who have had significant depression in their lives may be at greater risk for developing dementia. Secondly, many people with dementia have depression which, if left untreated, makes confusion and forgetfulness worse, so damaging the propensity for a better quality of life.
Let’s discuss both these aspects of depression and dementia.
There have been a number of studies have suggested that there is a link between depression and dementia. It now appears that individuals with long histories of clinical depression (particularly depression that has previously gone, more often than not, untreated) have a greater risk for developing dementia.
Doctor Jane Saczynski, of the University of Massachusetts in a 2010 study reviewed in the Neurology Journal, found that depression at a younger age is a significant risk factor for dementia. While the reasons are unclear she speculated that inflammation that occurs when a person is depressed may be a contributing factor. In addition, certain proteins found in the brain increase with depression; these also may be increasing the risk of dementia.
It’s important to note that a risk factor is not necessarily something that is likely to increase the chances that a particular event will occur. Having a risk factor for Alzheimer’s disease doesn’t always mean that you will ever get Alzheimer’s disease; equally, many people with histories of depression never get dementia.
So, what should an individual do if he or she has depression, particularly at a younger age? Common approaches include medicines, psychological assessment and talking therapies among other cognitive interventions. Many people with depression benefit from increased activity and socialisation, including things like exercise, meditation, time with children and activities involving pets.
Even if we don’t fully understand the mechanisms at work within the brain, there is no doubt that a long period of depression may lead to isolation, inactivity and feelings of hopelessness. In contrast, David says “the brain loves company and activity.” Interventions, including those mentioned above, are important. When you can overcome depression, it is clearly good for the brain.
How can you tell if your family member who has Alzheimer’s disease or dementia is depressed? Common signs include anxiety, sadness, lack of appetite, spending more time sleeping, weight loss and agitation. Sometimes they will express painful, upsetting thoughts or make negative comments like, “I want to die,” or “I’m so alone.” These are words that Carers should pay attention to as they are signs of depression.
Many people with dementia may not even know to be able to tell you they are depressed, but actions communicate a message. For example, a person with dementia who always loved gardening will most often still respond to an activity involving flowers, for example arranging flowers in a vase or taking a walk outside to see roses in bloom. A person with dementia who is depressed, develops apathy, refusing to do the things they’ve often enjoyed in the past, even things they may have enjoyed fairly recently.
If you suspect that your friend or family member with dementia is depressed, seek help from your doctor as soon as you can. There are several tools that your doctor or a neuropsychologist can use to assess and treat the person. Anti-depressant medicines seem to work well.
Activity is also a way to treat depression in persons with dementia. Step up your exercise to twice a day, get them outside in the sunshine, encourage attendance at a day program, or hire trained and compassionate in-home workers who will engage them in conversation and activities.
Perhaps the answer can be seen as “hugs and drugs.” When we treat the person’s depression, we can bring the person back to a higher quality of life. For them and for all of us as well.
- How do I deal with delusions?
Delusions are common with Alzheimer's disease and other dementias. Often they can simply be caused by the very nature of the forgetfulness aspect of the disease.
It can be one of the most upsetting things about being a family carer. You're always at your mum’s beck and call attending her every needs. You spend hours helping her, taking over shopping, driving her to as well as sitting and waiting for medical appointments; struggling with her personal care. Yet instead of thanks, you get accusations: “You’ve taken my purse! You’re stealing my money.” Like many elderly people, Mother hid her purse “to keep it safe.” However, she forgets that she put in under the pillow so now it’s missing. You are the only person who has visited; therefore, you must be the guilty party. Then, as usual, after a few minutes’ search, the purse turns up under the pillow, where Mum hid and forgot it….again!
Likewise, mistaken identity, another common delusion, can be caused by forgetfulness. As painful as it may be, your father may not remember what his wife, daughter, or son looks like, so he no longer recognises them. Or, forgetful and confused, he may think he is 40 years old, not 80, and so may mistake his grandson for his son.
Sometimes delusions are more mysterious. A person with dementia may decide that the neighbours have moved the fence in six feet during the night or that someone is constantly breaking into the house.
In any case, delusions can be frightening and painful for both the senior and the family. If you are caring for someone who is experiencing delusions, consider these tips:
- Try not to overreact or get upset, even if, like the false accusation, the delusion is upsetting. Remember, a real disease or disorder is attacking the brain. It’s the disease at work, not the person.
- In cases of mistaken identity, try offering some gentle assurances. “Gosh, honey, it’s me, Mary, your wife!” You can help maintain another’s dignity by saying, “You’ve got such a sense of humour” or “I know I look young enough to be your daughter.”
- Let the person know you have heard his or her concern. “Mum, I’m so sorry your purse is missing. That is upsetting. Let’s look around just in case it accidentally got misplaced.” You can then celebrate with a big smile and hug when you “find” the purse.
- “Tell me about that purse. Is it the red one or blue one?” Asking additional questions can allow the person to tell you more about worries and concerns.
- “Oh dear, I wonder what I did with it… let’s have a look around and see where I might have put it.”
- Don’t argue. You can almost never talk the person out of a belief or concern or convince him that he or she is wrong. If your family member thinks the fence has been moved, say that you will work on getting to the bottom of the situation or call the police to investigate.
- Take advantage of the passage of time. Sometimes your best efforts will fail and the person will continue to express the delusion. If you provide ongoing reassurance and take a low-key approach, these delusions will go away on their own.
Delusions can be one of the most challenging symptoms of Alzheimer’s disease and other dementias. If they become overwhelming, consider consulting a professional. Contact the person’s doctor, a geriatric specialist, or a professional caregiver who has received training in handling challenging behaviours like dementia.
- How can I help someone in late stage dementia?
Late-stage dementia is tough on everyone. The person with dementia requires significant care. How can you best help someone during this stage of life?
Most dementias in older persons are slow to develop. Alzheimer’s disease, the leading cause of dementia, progresses over many years.
Late-stage dementia is tough on everyone. The person with dementia may be fully incontinent, need help with eating, have difficulty walking, no longer be able to communicate, and almost certainly requires significant care. Families often prematurely grieve their loss, particularly if the person no longer recognises close friends and relatives.
Always approach persons with late-stage dementia with dignity. Never talk about them in their presence as though they aren’t there. Encourage anybody else who assists with their care to keep them well groomed, neatly dressed and clean.
Provide a reassuring touch. A gentle shoulder massage, hand rub, or friendly hug creates that needed human connection and shows the person he or she is valued.
Enjoy music. Music and song lyrics are in a different part of the brain than speech. Many individuals with late-stage dementia respond to beautiful music. They may even be able to sing an old, familiar song. Music brings happiness, joy, calmness and a sense of peace.
Manage pain. Most persons with late-stage dementia are not able to let you know in words that they are in pain. If the person shouts out, winces when touched or shows other signs of pain, talk to your Doctor about appropriate medications, interventions or physiotherapies. Watch for skin tears or bruises. Consult with a physiotherapist about chair exercises or other simple stretches that can help keep them more supple and lithe.
Consider a visit from a friendly cat or dog. Animals give unconditional love and the late-stage person will often take great joy from the wet nose or kiss of a dog. A cat in the lap provides an opportunity to pet the cat and enjoy its soothing purr. While it is always important to treat the person as an adult, some individuals in this stage do take comfort from holding a soft teddy bear (or substitute a baby doll). This is normal.
Go outside. When possible, take the person outside to get some fresh air and sunshine and to experience the beauty of nature. Use a wheelchair if needed. Going outside is sensory, spiritual and uplifting. The person will likely enjoy hearing sounds; feeling the sun’s warmth and seeing flowers, birds, playing children.
Take care of yourself. Seek out a support group or counsellor to share your feelings and obtain necessary support. Try to make time to exercise, eat well and spend quality time with family and friends or doing the things you enjoy doing for you.
Take a break. When you need a break, consider a professional caregiver who is trained in all stages of dementia care. “My goal was to get one smile an hour, but guess what? I often ended up with two or three,” Angela G., a Home Instead CAREGiver said about her experience with a late-stage person. “He seemed to understand some of my silly jokes. I enjoyed my time with him and I hope he enjoyed his time with me too.”
Take advantage of Care at Home Services / palliative care. Wonderful services (if you find and choose correctly!) are offered for home-bound individuals in the late stages of dementia, including assistance with nursing and medication, help with bathing, all-important respite, and spiritual support for the patient and their family.
Remember, the most important thing you can do during this part of life’s journey is to make sure the person with dementia knows they are surrounded by the love and warmth of family and friends. For you, the caregiver, you can enjoy those special moments when they happen. Equally important: Be sure to focus on taking care of yourself too or you may slowly find yourself in the position where you won’t be able to do either.
- How do I manage Mum's wandering?
“I just turned my back for a minute and mum had wandered off. She usually walks so slowly, but when she wanted to get away she became an Olympic athlete!”
Why do so many people with Alzheimer’s disease or other dementias - over 60 percent - wander away from their home environments? The reasons are pretty straightforward, says Michelle. “Individuals with dementia get confused about time and place. They may think they are late for work and walk out the door, or get confused trying to find the bathroom and go out the wrong door.”
Fear can also be a factor. “Their dementia may cause them to become frightened or upset, and walk or run away from a safe setting.” In most cases, the person is found quickly and safely, but sometimes the results can be tragic. No wonder wandering is such a concern!
“I’ve met families who can no longer get a good night’s sleep out of fear that the person with dementia will go out the front door in the middle of the night, It’s exhausting and tough to live in this state of constant worry.”
Home Instead’s Alzheimer’s and Other Dementias Training Program stresses the importance of creating a safe environment. To minimise opportunities as well as the propensity to wander, follow these tips from Jo Page, Registered Care Manager for Home Instead Senior Care (Cleveland):
- Make your home safe. Put deadbolts high and out of reach. Put a sign on the bathroom door or leave the light on at night if the family member is looking for the bathroom. Alarm doors and windows, or consider investing in an alarmed mat that goes off when someone gets out of bed.
- Look for patterns and triggers. A person may wander off in the morning thinking it’s time to go to work or school. Over stimulation or worrying about a friend, family member or a pet may be a cause. Mabel often worried about feeding her animals. When her daughter Margaret reassured her that they were being taken care of and spent a few minutes reminiscing about her mother’s farming life, Mabel calmed down and felt less of an urge to wander.
- Carefully plan outings. If your family member has a tendency to wander, don’t go to places with large groups or crowds. Take extra help along when possible. Choose places with family-friendly facilities including disabled / uni-sex bathrooms.
- Plan for the worst. Put telephone numbers and contact details in their pockets, purses and wallets and an explanation they may be lost. Have extra copies of photographs of your family member to give to first responders. Keep track of the clothes he or she is wearing.
David agrees. “Ultimately, the best way to prevent wandering is to fight boredom and keep the person with dementia active and engaged. When you keep him or her busy, home becomes much more inviting and the comforting, secure place to be!”
Our mum's carer has been/is a godsend in the way she cares for mum so well. Judith is not only a superb companion/friend for our mum but ensures she is well cared for too. Judith is very thoughtful and caring, she possess a unique quality and skill in calming mum and making her feel at ease when she is getting anxious. Judith has a wonderful rapport with mum. Mum became much happier when Judith came to give her companionship and care. It is such a relief to have someone as wonderful as Judith caring for our mum. Michelle, the franchise owner/manager has also been superb. A very efficient, effective and efficacious personalised service.Elaine L, Stokesley