As people get older, their bodies and minds slow down. It is a natural process that occurs, though the degree to which it happens may vary. Some can experience illness or disease – an incredibly common one being dementia.
WHAT IS DEMENTIA?
Dementia is the broad term used to describe several different conditions affecting the brain, including Alzheimer’s disease, vascular dementia, and frontotemporal dementia.
Within the realms of dementia care, those with Alzheimer’s account for 60-80% of all dementia cases.
DOES IT AFFECT EVERYONE?
In short, no. However, this disease is more common that most people think. According to the Alzheimer’s Society, nearly one in fourteen people are affected over age 65. Recent statistics have reported that currently there are nearly 850,000 people in the UK with dementia. Roughly 42,000 of that number living with dementia are under age 65.
A common question often asked is whether dementia can be inherited. There is still research being done to answer this, however, there are certain types of dementia that can potentially be inherited. The answer here still is not a definite yes or no. Early-onset Alzheimer’s (also known as young-onset Alzheimer’s) disease, is most commonly thought to be passed down by a faulty gene from parent to child. This type of dementia is one that typically affects those under 65. However, if you are worried about having this disease, there are early signs that you can monitor – as well as routinely checking in with your physician.
WHAT ARE THE EARLY SIGNS?
As with any illness, there are early symptoms or warning signs that may potentially signify its presence within your loved one. Keep in mind that these are only potential symptoms, and you should always consult your physician before self-diagnosing or trying to diagnose a loved one. That being said, you shouldn’t ignore any symptoms you may encounter – it’s always better to be on the safe side.
Dementia is a disease that affects the mind. Most evident with short-term memory, common symptoms of memory loss include forgetting recently learned information and the increased need to rely on reminder devices. Your loved one may fill their homes with reminder notes as another way to remember their schedules.
If navigating to their favourite or most familiar locations suddenly becomes difficult, it may be time to consult a physician. It may not always manifest by trouble navigating, but perhaps by means of forgetting the rules to their favourite game or no longer remembering how to effectively manage their budget.
A common symptom of dementia is confusion. This can manifest itself by means of poor judgement and decisions, most commonly with money. For example, large donations to telemarketers. Your loved one may begin finding it difficult to re-trace their steps, may misplace things and then accuse people of stealing them.
LOSS OF MOTOR SKILLS
Your loved one may find difficulty with judging distances and colour contrast. This can cause problems with driving or walking down the stairs. You may notice this translating as your loved one complaining of vision problems or a difficulty with basic mobility.
DIFFICULTY WITH LANGUAGE
As people age, it’s common to have a more difficult time following conversation. This can also be an early sign of dementia – though it’s usually a bit more escalated. Your loved one may noticeably begin to struggle following a conversation or their favourite television programmes.
They might have a hard time finding the right words or using a full vocabulary. Joining conversations or expressing their thoughts may become increasingly difficult as well.
MOOD AND PERSONALITY CHANGES
Along with confusion, there are other changes in mood and personality that may signify the presence of dementia. Your loved one may become increasingly anxious or fearful. They may become suspicious, especially if they are misplacing things.
Becoming withdrawn or developing anti-social tendencies is quite common, which may result in depression. This change in personality comes from problems with judgement as dementia progresses. For example, a very shy person may become suddenly outgoing or a typically very joyful person could become anxious and fearful.
Your loved one could also suddenly become very uncomfortable or easily upset at home, work or places that are unfamiliar to them.
DIFFERENT TYPES OF DEMENTIA CARE
Caring for someone with dementia is a large task with many responsibilities. Dementia care is not something to take lightly, as it can be very stressful for both you and your loved one. This is true whether you choose to care for your loved one yourself or decide upon a care home environment. The most important thing to remember is to keep your loved one’s comfort in mind. Do your research, consult your physician and choose the avenue of care that best suits you both.
CARING FOR YOUR LOVED ONE ON YOUR OWN
As dementia progresses, your loved one will likely become more easily confused, stressed or anxious. Because of this, improving your communication skills is essential.
Treat you loved one like the person you’ve known for years; they haven’t changed, their mind just is beginning to work in a different way. Simplifying your language is an easy way to begin the transition from loved one to loved one and caregiver. Maintain your patience and speak in a low, reassuring tone; this will put your loved one at ease and decrease the risk for spikes in anxiety or stress.
There are also other things to be mindful of if you are planning on taking on the role of primary caregiver. These include:
Television and radio can be distracting, especially for someone that no longer has full cognitive function. Try to limit the amount of people in a room, as this will decrease the chance for your loved one to experience over-stimulation and become stressed or anxious as a result.
Your loved one is experiencing their illness in a very different way than you are. Whilst you know what is happening, they may not – or at least may not fully understand it. Their comprehension of what is happening may be knowing that they’ve been independent for years and now find themselves struggling with daily tasks such as eating or remembering to turn the cook-top off.
When your loved one becomes upset, wholeheartedly listen to them. Show them you are paying attention through body language and eye contact. Respond with affection and connect with them emotionally, then redirect the conversation. You could suggest going for a walk, listening to music or even having a snack.
BE MINDFUL OF WANDERING
People with dementia can become increasingly confused, leading to wandering tendencies. These tendencies could have many triggers, such as a need to go to the toilet or the communication of stress. Regular exercise is a good way to decrease wandering – however, it is helpful to always have your loved one wear an identification bracelet or sew identification labels into their clothing.
If you are the primary caregiver, it helps to identify wandering triggers and try to prevent them. For many, it can be as simple as putting a handbag or keys out of reach. Your loved one may refuse to leave the house without essential items like these in hand. If they wander inside the home, child-proofing sharp objects and doorknobs will aid in their safety and make you, as the caregiver, more at ease. In the case that your loved one does get out of the house, keep a recent photo of them on you in case you need to report them missing.
KNOW THAT INCONTINENCE IS COMMON
Incontinence is common in those with dementia. Many times, it is because they cannot find the toilet, or perhaps have a hard time communicating their needs to caregivers. In this instance, providing easily washable clothing with elastic waistbands or Velcro closures makes dressing and hygiene easier on both you and your loved one. Another option is utilising incontinence aids which can typically be found in your local supermarket.
One helpful way to reduce incontinence is to schedule fluid intake and be mindful of when your loved one may need to use the toilet. Limit fluids before bed, as this may lead to wandering if they need to use the toilet during the night.
Certain drinks, like coffee, have diuretic properties. It helps to be aware of this, and if you can’t be there 24 hours a day to aid your loved one – using visual cues like clear signage can help your loved one relieve themselves on their own.
BEHAVIOUR CAN EASILY CHANGE
Dementia care is stressful for both the caregiver and their loved one. Especially because your loved one’s mood swings may be frequent and often unpredictable. What worked in their routine yesterday may not work today, they may become easily agitated or even lash out.
Keeping a similar routine each day will help with your loved one’s stress levels, as does supporting their independence. Shadowing, or following their caregivers around is relatively common. Often it signifies that they’d like to help you in your duties, so giving them a task like folding linens or laundry aids in helping them feel like their old selves.
If your loved one becomes paranoid, it’s best to not become frustrated with them or try to restrain them, as this can increase anxiety. They may become easily spooked, often by shadows or hallucinations. Turning the lights on well before sundown, placing night-lights in every room and staying calm will greatly reduce the potential for this to happen, as will staying calm and stating your perception of the situation. Remember, even if you know the hallucinations are not there, what your loved one is experiencing is very real to them.
THEY MAY HAVE DIFFICULTY CONTROLLING EMOTIONS
Whilst not uncommon, it can be stressful for you, the caregiver, to handle emotional outbursts if you don’t know what to expect. One way to be able to predict an outburst is by learning the triggers that may cause one, and what you will say or do if they occur.
These outbursts may be your loved one’s way of communicating stress or even a physical need such as needing to use the toilet.
If an outburst occurs in resistance to their daily routine, it’s always best to stay calm with your loved one. Allow extra time for their routines and explain the steps as you do them in simple language to help your loved one feel more at ease.
Making mealtimes special is a lovely way to maintain an emotional connection with your loved one. Sit down with them and eat your meals together with their favourite music playing in the background. Support their independence and assist only when needed. This can be done by preparing food with your loved one in mind, such as finger foods and using glasses with straws.
If your loved one is having a hard time finishing their food, try having five smaller meals each day rather than three larger ones. Soft foods are incredibly helpful as dementia progresses if swallowing becomes difficult.
We all love to snack, and your loved one is likely no different. If they’re losing weight, keep a variety of high-calorie snacks at the ready for between meals. If gaining weight is an issue, low-calorie snacks and fresh fruit or vegetables are always good options. Caring for someone with dementia requires a healthy diet, of which can be easily achieved with proper planning. If you need assistance with planning a diet for your loved one, don’t hesitate to be in contact with your physician or a nutritionist.
Try to adopt their previous routine as much as possible. If they have preferred products or scents, try to use them. Be mindful of the temperature of rooms or of a shower, as older individuals are more sensitive to changing temperatures.
To help your loved one feel secure, never leave them unattended in the bath. They may not always need assistance, but it will help them to feel safer knowing you are there if they should need you. Bathmats and grab bars also will put your loved one at ease, knowing that they can use them if they have any problems with balance.
DON’T FORGET ABOUT YOU
Remember that you are an essential part of this care-giving relationship. Seek support for yourself, because becoming a caregiver is a large responsibility and can put you under a lot of stress. If you need help, ask for it – and don’t be afraid to accept support.
If a family member or friend arrives to help you, make them aware of your loved one’s preferences and tendencies – it will make both of you more at ease.
Dementia is more than just memory loss, so being realistic about the progression of the disease will help you cope with it in your loved one and will help you in supporting them through its progression. It will also help you to plan for the future of both you and your loved one.
DEMENTIA CARE IN A CARE FACILITY
If you would rather pursue the route of professional care, there are many options for dementia care services available.
- For those in early to mid-stages of dementia that still prefer to live at home.
- A caregiver that provides 24-hour assistance and lives in the home in which they are providing care.
- Good for middle to late stages of dementia for those that need constant assistance or supervision.
- Respite care can be few days per week or a few weeks.
- If the primary caregiver needs a break, it’s a great option to provide quality care for your loved one.
- Can be a family friend, a professional caregiver or in a care facility.
ASSISTED LIVING / RESIDENTIAL CARE
- Care facilities in which your loved one can live and have care services provided for them.
- Another name for this type of care is residential memory care.
- Assisted living is more for early stages of dementia.
- Residential memory care is for later stages that require constant care with services that include:
- Basic daily activities
- Social activities
- Basic housekeeping
- Medication monitoring
- 24-hour emergency care
- Usually used in the late stages of dementia.
- There is 24-hour supervision in these care facilities.
- Skilled nursing care is provided.
- Nursing homes also have the benefits of residential memory care units.
- It can be a more expensive option.
- Used in the end stages of dementia.
- Used to keep patient comfortable until the end of their lives.
- Typically used for patients with 6 months or less to live.
- Hospice often requires referral by physician.
- This type of care can be provided in hospitals, nursing homes or in the patient’s home.
FINDING A DEMENTIA CARE HOME NEAR YOU
There are two primary ways to go about searching for a dementia care home. You can find it yourself, with the vast resources available to you either online or via word of mouth. Or you can utilise guided assistance, which is when you would go through an advisor during the process. Your advisor would help you find a care home in your preferred area that meets both your needs and your budget.
WHAT TO LOOK FOR IN A CARE HOME
There are many emotions that come with moving your loved one to a care home. You may experience relief or guilt, or maybe even both. When looking for a care home for your loved one, always consult the Care Quality Commission (CQC) which has guidelines detailing different care homes as well as results from their latest inspections.
Care Home Advisor is an excellent resource for finding a care home to suit your needs, as is setting up a tour of the care homes you are considering. Your loved one’s care home should be one that meets both you and your loved one’s needs, be within budget and have space available.
Searching for a care home can be stressful, so it’s always best to come prepared with questions to ask. Some helpful questions are:
- What is the atmosphere like? Is it welcoming and inviting? Are you greeted upon arrival?
- Are there any unpleasant smells lingering?
- Is there appropriate signage and visual cues to aid people with dementia? (i.e. signs for toilets, dining halls, etc.)
- Do residents have a care plan? How often is it reviewed? Who is it reviewed by? Are they digital and/or shareable with family/relatives?
- Do the staff have experience and training with dementia care?
- Are visitors encouraged to join the residents for meals or for in-home social activities?
- Are children or pets welcome?
- Is there a relatives’ support group?
- Are there amenities nearby that residents can enjoy? (Place of worship, pub, shops, park)
- Are there call systems in place if someone needs help?
- Are the corridors and toilets wide enough for a walking frame or wheelchair?
These are just examples of questions you could prepare. There is other useful information for asking the right questions and selection of a care home here.
ALWAYS CONSIDER YOUR LOVED ONE’S COMFORT
Most importantly, focus on your loved one’s comfort. Would they be more comfortable with a care home setting or in their home with a personal carer? Are you comfortable with their decision?
If you choose a care home – is it a home in which your loved one feels comfortable and at home? Always remember to accept support, for both you and your loved one, when it is needed. Finding a care home should be a positive experience, because it means your loved one will have the care and support that they require.