If Youre Struggling To Cope
Carers often find it difficult to talk about the stress involved with caring. If you feel like youre not managing, dont feel guilty. There is help and support available.
You might benefit from counselling or another talking therapy. Talk to your GP to find out what support options are available.
Taking regular breaks can help you look after yourself and better support you in caring for someone with dementia. Family and friends might be able to spend time with the person you care for so you can have some time for yourself.
Other options include:
- day centres social services should provide details of these in your area
- respite care this can be provided in your own home or for a short break in a care home
Living Well With Dementia
Remember that people diagnosed with dementia are not completely helpless.
Dementia progression is usually fairly gradual. Live one day at a time and cope with things as they come.
Involve the person with the diagnosis as much as possible in future plans for their care.
Plan as many things in advance as possible when it comes to future care so that later on, family members will be able to follow their loved ones plan.
Set up the environment for success.
Design the space where the individual with dementia lives to enable him or her to function well. For example, the caregiver might use a piece of paper to draw an outline for a place setting so their loved one can set the table, or label shelves so they can put groceries away on their own.
Use memory tools.
Just like when vision starts to decline and people wear glasses to read, those with dementia use memory tools like alarms and to-do lists to remember things like birthdays, doctor appointments and to take their medicine.
Emphasize remaining strengths.
It is possible for a person with mild or moderate dementia to continue to learn using remaining learning and memory systems. Try to facilitate daily successes by:
- Providing visual and verbal cues for everyday activities.
- Simplifying tasks and routines.
- Breaking larger tasks into small steps.
- Identifying and engaging in activities that are pleasant and meaningful to the person with dementia.
This article was reprinted with permission by the American Psychological Association .
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.
Also Check: Alzheimer Awareness Ribbon
How Do I Care For Someone With Dementia
While it is often challenging and overwhelming to provide care for someone with dementia, there are some tips for making it go as smoothly as possible, for both you and your loved one with dementia:
- Educate yourself about dementia, and think about the life story of the person for whom you are caring. What were their routines and interests pre-dementia? What was their childhood like?
- Think about adapting their environment to them, as opposed to trying to get them to adapt to their environment.
- Understand any traumatic incidents in their past and avoid doing or saying anything to revisit them.
- Focus on validation instead of reality orientation:
- Validation involves living in their reality, even if it is not accurate.
- Reality orientation means trying to correct them, and can lead to increased agitation.
Living Well With Dementia: How Psychologists Can Help
Although dementia mainly affects older people, it is not a normal part of aging. Dementia is a syndrome caused by a variety of brain illnesses that affect memory, thinking, behavior and the ability to perform everyday activities.1 Alzheimers disease is the most common type of dementia, accounting for 60 to 80 percent of cases, and nearly one in every five dollars spent by Medicare is on people with Alzheimers or another dementia.2
New research suggests that people are often correct when they think their memory is declining. Individuals may pick up on subtle signs before they are obvious to others. Normal memory problems do not affect everyday life. If someone forgets where they put their keys, it may be because that individual is not well organized. However, if someone forgets what keys are used for or how to unlock doors, it may be a more serious matter.3
A diagnosis of dementia can be emotionally overwhelming for the individual as well as the family. Individuals with dementia require more intensive care and assistance as the dementia worsens. Though there may not be a way to completely alleviate symptoms of dementia, maintaining sleep patterns, a healthy diet, regular exercise, cognitive stimulation and socialization can help people with dementia maintain a normal level of functioning for as long as possible.
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Communicate Patiently Slowly And Clearly
Use physical touch to help communicate. For instance, if a person with dementia is having a hallucination, a gentle pat from you might draw them back to reality and out of their frightening hallucination.4 Sometimes holding hands, touching, hugging, and praise will get the person to respond when all else fails.
Communication or more specifically failed communication can be the crux of problems for many caregivers. Weve whittled it down to some of the key aspects that you could focus on to make it easy for you and the person with dementia:5
Handling Sleep Problems And Sundowning
Sundowning is also known as late day confusion. Dementia symptoms may be more prevalent in the afternoon and evening. Due to their confusion and memory loss, they may also be unable to distinguish between daytime and night-time.
- Maintain a routine Keep their day-to-day activities structured, with regular meal, shower, and bedtime.
- Avoid napping in the eye Daytime naps will make it more difficult for your patient to sleep well at night. Instead, keep them engaged in other activities throughout the day.
- Encourage exercise Exercise promotes a healthier lifestyle and keeps the mind active before winding down at night. Consider going to your nearby exercise corner, brisk walking around your neighbourhood, simple stretches, and Qigong.
- Avoid caffeine and sugar Especially from the afternoon onwards.
Adjust the environment In the daytime, ensure that the place is well-lit to make it clearer to the patient that it is daytime. Before bedtime, turn off the lights, reduce ambient noise, and adjust the room to a comfortable temperature to prepare a conducive environment for sleep.
Unpaid Caregivers And The Supports Available
The federal, provincial and territorial governments recognize the need to keep seniors at home as long as is suitable for the person, as well as the benefits of doing so. They also recognize that their caregivers require significant support. The literature describing and analyzing services that support and sustain people with dementia living in their own homes is growing. The expansion of these services and programs is also growing, partly due to policies and practices that are increasingly emphasizing the benefits of supporting people to live in their own homes, for the individuals, their caregivers and health systems at large. While there are multiple gaps in the evidence base, some of the practices and recommendations that may help keep seniors with dementia in the community longer include
Providing effective support to those living with dementia in the community and their families is an important component of dementia strategies. Such support helps caregivers to maintain their caregiving activities and have a personally rewarding experience. Find out more about some of the community support resources available for caregivers in Unpaid caregiver challenges and supports.
Sexuality And Intimacy In Dementia
A person with dementia may experience changes in sexual desire or behave in ways that are not considered socially appropriate. This factsheet suggests some of the reasons why these behaviours may occur, ways to meet the needs of the person and approaches to challenging situations.
Also Check: Purple Ribbon Alzheimer’s
Caregiving In The Early Stages Of Alzheimers Or Dementia
In the early stages of Alzheimers disease or another type of dementia, your loved one may not need much caregiving assistance. Rather, your role initially may be to help them come to terms with their diagnosis, plan for the future, and stay as active, healthy, and engaged as possible.
Accept the diagnosis. Accepting a dementia diagnosis can be just as difficult for family members as it for the patient. Allow yourself and your loved one time to process the news, transition to the new situation, and grieve your losses. But dont let denial prevent you from seeking early intervention.
Deal with conflicting emotions. Feelings of anger, frustration, disbelief, grief, denial, and fear are common in the early stages of Alzheimers or dementiafor both the patient and you, the caregiver. Let your loved one express what theyre feeling and encourage them to continue pursuing activities that add meaning and purpose to their life. To deal with your own fears, doubts, and sadness, find others you can confide in.
Make use of available resources. There are a wealth of community and online resources to help you provide effective care on this journey. Start by finding the Alzheimers Association in your country . These organizations offer practical support, helplines, advice, and training for caregivers and their families. They can also put you in touch with local support groups.
Resources For Carers Of Someone With Dementia
- an Aged Care Assessment Team â helps older people and carers work out whether they need home-based support or residential care and can provide information on suitable care options and arrange access or referral to appropriate residential or community care
- the Aged Care Information Line â gives support and assistance with queries about access to home and community care, respite fees, and bonds and charges
- Commonwealth Respite and Carelink Centres around Australia â provide information about the range of community-care programs and services available to help people stay in their own homes
- the Carer Advisory and Counselling Service â provides carers with information and advice about relevant services and entitlements.
Also Check: Dementia Ribbon
This Booklet Includes Sections On:
- Understanding the persons diagnosis
- Taking on the caring role
- Looking ahead: putting plans in place
- Understanding and supporting the person with dementia
- Services, support and housing
- Supporting a person in the later stages of dementia
- End of life care and support
- Alzheimers Society services and support
- Other useful organisations
Keep Up Social Connections Just 10 Minutes A Day Can Help
Things like music therapy or just playing some pleasing, quiet music, a massage, or exercise can help the mood and behavior of some people with dementia. Unfortunately, the research on these alternative therapies is not far-reaching enough to suggest them as treatment or therapy for dementia patients, but you could see if these work for your loved one.11
Encourage people to visit and meet with the patient. Sometimes the embarrassment or fear of others seeing the changed behavior, personality, and memory of the individual can be discouraging when it comes to having visitors. Overcome this, because these relationships are crucial. Keep up their routines and hobbies and interests as much as possible. If they were a weekly church-goer, go to church with them. If they liked walking in the park every evening, they should continue to do so, but with someone to help them if they forget their way home. Keep up as much of a semblance of normalcy as you can. As one study found, the impact this can have is huge! Researchers found that dementia patients who indulged in as little as 60 minutes of conversation every week which translates to an average of 8.5 minutes a day saw reduced agitation levels. This also cut down the perception of pain they were living with.12
Read Also: Can Dementia Turn Into Alzheimer’s
Coping With Feelings As A Carer Of Someone With Dementia
- Feel the pain â allow yourself to really feel what you are feeling. Denying the feelings only intensifies and prolongs the pain.
- Cry â tears can be therapeutic.
- Talk â share the pain to help diminish grief. It can be helpful to talk to a person outside the family, such as a counsellor.
- Keep a journal â a private place where anything can be written, including unfulfilled wishes, guilt, anger or other thoughts and feelings.
- Let go. Try not to be engulfed by bitterness.
- Find comfort. Different people have different ways to find comfort, including using rituals like prayer, meditation or other activities.
- Hold off on decisions. Tread carefully before making decisions and thoroughly explore all options before you take any major steps.
- Be kind to yourself, be patient with your feelings, and find a balance between the happy and sad person, the angry and peaceful, the guilty and glad.
- Learn to laugh again and rediscover your sense of humour. Finding joy in life can be one way to honour the happy times that you used to share with the person you are caring for.
Developing A Treatment Plan
Psychologists may work with individuals with dementia and their families independently through a private practice or as part of a health care team. Psychologists will work with the individual and family to develop strategies to improve quality of life and manage emotions related to the dementia diagnosis.
In working with a psychologist, an individual with dementia and those who provide care for them may discuss what is already being done well to manage the dementia and which behaviors may be improved. The psychologist may ask the individual or caregiver to do homework like practicing memory tools. Memory tools can help individuals become more organized to better manage their symptoms of memory loss. These tools might include:
Read Also: Colors For Alzheimer’s Awareness
Help With Washing And Bathing
Some people with dementia become anxious about their personal hygiene and might need help washing. They might worry about:
- bath water being too deep
- the water from an overhead shower sounding loud
- fear of falling in the shower
- being embarrassed about getting undressed in front of someone else, even their partner
Washing is a personal, private activity, so try to be sensitive and respect the persons dignity.
It might help to:
- ask the person how theyd prefer to be helped
- reassure them you wont let them get hurt
- use a bath seat or a handheld shower
- use shampoo, shower gel or soap they prefer
- be prepared to stay with them so if they dont want to be left alone
Making The Home Safer Through Home Modifications
For caregivers, home modifications are often forgotten but immensely useful in aiding you in caring for your loved one. We have compiled a list of useful list of ways you can adjust your living environment.
- Install locks on windows and doors This prevents your loved one from wandering outside alone.
- Light up pathways and put up signages This allows your loved one to move to the toilet independently.
- Reduce fall risk in the toilet Install grab bars, shower seats, and non-slip flooring in the toilet to reduce fall risk.
- Keep dangerous items hidden Including poisonous items e.g. detergents and mosquito repellant
- Have a set of spare keys In case you are locked out by your loved one.
- Create clear pathways Remove obstacles and hazardous items lying around the home to reduce fall risk.
- Remove or tape down carpets and rugs to prevent tripping
Read Also: What Color Represents Dementia
Plan For Gaps In Care
Caregivers may need to take on more caregiving responsibilities if in-home health aids or other family members cannot come by as frequently.
They can prepare for unexpected gaps in care by first making a list of essential supplies, such as medication, personal hygiene products, and food.
It is a good idea to stock up on nonperishable, essential supplies.