Frequently Asked Questions
With an increasingly ageing population, many of us will have to face questions regarding the care of our parents at some point. For those who have a loved one with a diagnosis of dementia, the care considerations are far more complex.
Watching someone that you love succumb to dementia, it can feel as though you are losing them a little piece at a time. The condition affects the brain, and as it progresses, it affects the person’s memory, emotions and even character. It is important to separate the symptoms from the person and to remember your loved one as they were before the condition took hold. At the same time, there are important points to bear in mind that will help both you and your loved one to tackle many of the problems that dementia brings.
Dementia can give rise to challenging behaviour, including angry outbursts and aggression. Always remember that your loved one is not responsible for everything that they say or do, so meet anger and frustration with calmness. Keep your voice soft and gentle to soothe your loved one and reassure them that all is well.
Dementia can lead people to repeat the same sentence over and over or perform the same behaviour repeatedly. Although this can be intensely frustrating, try to keep patient. An effective way of breaking the cycle of repetitive activity is to direct the person to another kind. Try not to lose your patience, but if you feel that you simply cannot cope, walk away for a few minutes to give yourself a break.
Whether you are caring for your parent in your own home, or in theirs, it’s a good idea to arrange for some respite care from time-to-time, to give yourself a break. Look for private care companies that provide high-quality live-in care, and choose one which specialises in Alzheimer’s care and dementia care. Many families feel guilty if they take time away from their loved one when in fact, it provides a much-needed break which can be helpful in clearing the mind and dealing with the stress that dementia creates.
Keep your loved one safe
People with dementia have a habit of wandering, and of getting lost. If your loved one shows signs that they might attempt to leave the house, then take sensible safety precautions. You could fit a lock higher up on the door, for example, or set an alarm to alert you when they open the front door.
Emergency bracelets are a good idea, as these provide details of your loved one’s name and address in case of an emergency. Increasingly, families are using GPS systems that allow them to keep track of wandering family members too, so investigate options that might be appropriate in your own circumstances.
A diagnosis of Alzheimer’s Disease can be painful and upsetting, both for the person receiving the news and for their family and friends. You will almost certainly be concerned about how this condition will impact the day-to-day lives, both now and as it progresses, of everyone involved.
Alzheimer’s Disease affects a person’s memory, but it can also mean they struggle with routine daily tasks such as washing, dressing, cooking and eating, and they may no longer be able to continue living independently. They might also exhibit challenging behaviour, which can be difficult to deal with.
Starting a conversation
If your loved one is facing the challenge of living with Alzheimer’s Disease, it is important that you begin a conversation with them now so you can find out about their wishes for their long-term care.
Discussing dementia care in the early stages of the condition will ensure you know what your loved one wants. Later on, you may take some comfort in the fact that you’re acting in their best interests and according to their expressed wishes.
When asked, the majority of older people say that independent living is important to them and that they would much rather remain living in their own homes for as long as possible. For those living with dementia or Alzheimer’s Disease, this is important, as being surrounded by familiar things and spaces can bring a sense of security and comfort.
Moving into a dementia care home can be a distressing experience for someone experiencing memory loss, and they may find it hard to cope with the noise and constant change of communal living in a residential home. In many cases, the most appropriate course of action will be to organise an in-home care package.
Preparing for dementia care
One of the first things you need to consider is how your loved one’s healthcare and financial needs will be managed when they are no longer able to do it themselves. Of course, it’s painful to look a future when they can no longer make their own decisions, but it’s important that you open a dialogue with them now, while they are still able to express their wishes. It may be a good idea to set up a Power of Attorney, which will enable you to make decisions on their behalf, as their condition progresses.
You will also need to consider how much care they will need in the coming years. As their condition progresses, most people with Alzheimer’s or dementia will need 24/7 care, to ensure they are both safe and have the highest possible quality of life. This care may given in a residential home setting, or it may mean looking for a dedicated live-in carer, to look after your loved one in their own home.
As our parents age, a certain degree of forgetfulness is to be expected. Other issues such as advancing technology can also make doing certain everyday tasks difficult, and this can lead to frustration and anger. The big question is how to tell the difference between typical age-related changes and actual dementia-related symptoms? It’s important to know, because if symptoms of Alzheimer’s are detected early enough, interventions can delay the onset or advancement of the condition. In turn, this leads to a longer and more independent lifestyle.
The below outlines how to distinguish between Alzheimer’s and dementia symptoms from age-related changes.
One of the most frequent signs of Alzheimer’s is memory loss. It’s common for those affected to forget important dates such as birthdays or anniversaries or ask the same question several times in a short period. Someone in the early stages of Alzheimer’s may take to using more and more physical cues to remember details, perhaps post-it notes or these days, even on their phone or laptop. However, not all forgetfulness is related to dementia. The difference is that general forgetfulness usually results in remembering again later, for example, a missed doctor’s appointment or someone’s name.
Difficulty with daily tasks
Tasks such as driving to a familiar place, using a spreadsheet after 20 years of experience, or even forgetting the rules of chess or backgammon, can all be signs of dementia-related illnesses. These shouldn’t be confused with trouble involving tasks that were never learned, such as retrieving voice mail messages from a new phone or driving to a new location on unfamiliar roads.
Problems with time and place
People with Alzheimer’s often lose track of the day, week, month or year, or have problems understanding where they are. Alzheimer’s affects a person’s ability to remember events that have immediately happened, and this leads to uncertainties around time and place. However, thinking it is Wednesday and then remembering it is Friday is not a sign of dementia.
Visual images and spatial reasoning
Some people with Alzheimer’s may have trouble understanding common signs and images. This is related to changes in the brain related to determining colours and shapes. Likewise, difficulty judging distance and timing can make driving dangerous.
Losing vocabulary strength in speaking and writing
Using words to describe an object, rather than using its common noun name, can often be a sign of early onset dementia. Someone might call a ‘torch’ a ‘hand light’, for example, or struggle to make themselves understood in conversations, and these signs need to be recognised. Simply struggling to find the right word, before eventually finding it, is not connected to Alzheimer’s.
Dementia in its mid-to-late stages and Alzheimer’s can present a whole spectrum of behaviours. It can make people feel lost, confused, anxious and frustrated, which can result in physical manifestations of these feelings, as well as angry outbursts and suspicious behaviour.
Understanding behavioural problems caused by dementia
Learning and understanding strategies to deal effectively with dementia behaviour is essential if you are a caregiver or provide live-in care. Dementia care staff will be trained to deal with these behavioural problems, but learning how you can manage better when faced with a loved one’s aggressive, oppositional or sometimes violent actions or speech will help you both. The way you communicate with them can make a significant difference.
While each person with the disease will handle their feelings in their own way, certain behaviours are common among people with dementia. These include suspicion of others, aggression, screaming and shouting, pacing back and forth, repetitively carrying out an action or repeating questions over and over again.
These actions are an attempt to communicate, and it is important to remember that your loved one is not choosing to be difficult. Try and stay calm and establish why they’re expressing themselves in this way. By trying to understand, you are closer to being able to calm them down. If you spot early warning signs that your loved one is about to have an outburst, you may be able to prevent it. Distraction techniques can be effective in refocusing a person’s energy elsewhere, preventing the challenging behaviour from being displayed.
Becoming suspicious of others
A common problem for people with dementia is that they become suspicious of others. This can be caused by memory loss, general confusion and lack of recognition of friendly faces. You may find they accuse you or their live-in carer of taking their possessions. If they lose something, they may panic and think they’ve been burgled. They may believe that everyone is watching them or planning something against them. This behaviour may appear paranoid and delusional, but you must remember that these feelings are very real for your loved one. Listen to their concerns, do your best to calm them down, and change the subject as best you can.
This is a common symptom of dementia and can be especially upsetting and scary when it is totally out of character. Witnessing your loved one’s personality changing can be distressing, and is often the hardest part for a carer or family member to deal with. Aggression caused by dementia most commonly manifests itself in using offensive language, shouting, repetitively yelling the same thing, or prolonged screaming. The causes for this behaviour include depression, frustration with a situation, humiliation or fear, loss of judgement, loss of self-control and inhibitions and no other way to express feelings.
Try and identify any triggers that set off this behaviour to avoid them in future. Don’t argue or become aggressive yourself, as your loved one may become violent. If you find this hard, remove yourself from the room. Always remember, even if it seems very personal, it is the condition causing the behaviour. When your loved one has calmed down, act normal once again to move forward.
Changes associated with ageing can include the slowing down of the brain and body. This is not necessarily anything to worry about, as the individual’s intelligence remains unchanged, but it can take longer to process information. Memory changes may also occur, and many older people have difficulty remembering things such as place names and the names of people.
Many older adults experience forgetfulness to some extent. You should not be overly concerned if your loved one finds himself in a room and cannot remember what they entered it for, or is unable to recall the name of a film or a familiar address. Sometimes, if given more time, they will recall the missing information, but if not it may not be a sign of anything more than a normal part of the ageing process.
Mild Cognitive Impairment
If you become aware that a loved one is having frequent memory problems, they may have Mild Cognitive Impairment, also known as MCI. MCI does not usually affect their ability to continue independent living or interfere with their daily life, but close friends and family are likely to notice the decline in their mental function or memory. People who have this condition do, however, have an increased likelihood of developing a form of dementia such as Alzheimer’s disease, although this is by no means inevitable.
Symptoms of Mild Cognitive Impairment
The symptoms of MCI can include losing or misplacing things or regularly forgetting appointments or events. You may also notice that your loved one is having difficulty following a conversation, or that they cannot remember the name of a new acquaintance.
This does not mean that they cannot continue to live with the level of support they currently enjoy. If your loved one can remain at home with home care visits to help with tasks they find difficult, there is no reason for you to feel you have to arrange full-time elderly or dementia care for them.