The Alzheimers And Dementia Care Journey
Caring for someone with Alzheimers disease or another type of dementia can be a long, stressful, and intensely emotional journey. But youre not alone. In the United States, there are more than 16 million people caring for someone with dementia, and many millions more around the world. As there is currently no cure for Alzheimers or dementia, it is often your caregiving and support that makes the biggest difference to your loved ones quality of life. That is a remarkable gift.
However, caregiving can also become all-consuming. As your loved ones cognitive, physical, and functional abilities gradually diminish over time, its easy to become overwhelmed, disheartened, and neglect your own health and well-being. The burden of caregiving can put you at increased risk for significant health problems and many dementia caregivers experience depression, high levels of stress, or even burnout. And nearly all Alzheimers or dementia caregivers at some time experience sadness, anxiety, loneliness, and exhaustion. Seeking help and support along the way is not a luxury its a necessity.
Just as each individual with Alzheimers disease or dementia progresses differently, so too can the caregiving experience vary widely from person to person. However, there are strategies that can aid you as a caregiver and help make your caregiving journey as rewarding as it is challenging.
Dementia: The Effects On Family And Friends
Dementia not only effects the person diagnosed, but it also effects the family members and loved ones surrounding the affected. A few of the most common feelings those surrounding the affected experience are guilt, grief and loss, and anger. Whatever it be that you might be feeling, know that these emotions are valid feelings. Dementia can be a tough syndrome to handle, it can be vastly time-consuming caring for a family member who is affected. Being the full-time caregiver can also change your personal life.
The Emotional Aspects
Guilt: Guilt is a very common feeling once a loved one is diagnosed with dementia. You may be feeling guilty for feeling embarrassed about their strange behavior, lack of patience, or having feelings of burden from providing care.
Grief and Loss: When we are faced with a dementia diagnosis, we are also faced with loss. It becomes evident that the relationship we once had with this person will change and we will be faced with loss of the future and time together. These feelings are different for every person and sometimes will not be easier with time.
Changes in Relationships
Asking for Help
For further information read up on this case study done in the UK on family members providing care for their loved ones here.
Grief And Loss Experienced By Carers
Grief is an emotional response to loss. The loss could be the loss of a relationship, moving house, loss of good health, divorce or death. If someone close to us develops dementia, we are faced with the loss of the person we used to know and the loss of a relationship.
People caring for partners are also likely to experience grief at the loss of the future they had planned together. Grief is a very individual feeling and people will feel grief differently at different times.
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Anger Experienced By Carers
It is natural to feel frustrated and angry. You may be angry at having to be the caregiver, angry with others who do not seem to be helping out, angry at the person with dementia for difficult behaviour and angry at support services.
Sometimes, you may feel like shaking, pushing or hitting the person with dementia. Feelings of distress, frustration, guilt, exhaustion and annoyance are quite normal. If you feel that you are losing control, it may help to discuss your feelings with your doctor or an Alzheimerâs Australia counsellor.
How Dementia Affects Communication
People with dementia experience increasing difficulties with communication due to progressive memory problems. This arises as deterioration in working memory impairs the ability to keep hold of and use information during conversation.
As a result, the conversation of people with dementia may often seem repetitive and difficult to follow. Social situations become increasingly difficult for people with dementia as they forget names, recently discussed topics and even words or the meaning of particular words.
Memory problems may mean that the person with dementia typically requires a great deal of prompting and reassurance. A person may need to be reminded of where they are, what day it is, what time it is and what they were just doing and so on. The constant need for reminding, monitoring and reassurance undoubtedly weighs heavily both on people with dementia, as well as care staff and family carers.
In turn, family carers and care staff are faced with the challenge of making themselves understood in the face of their own decreasing ability to understand the person with advanced dementia. In short, the mutual struggle to understand and be understood may be the most frustrating and upsetting impact of dementia for both people with a diagnosis and their caregivers .
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Trouble Learning New Things
If your loved one is diagnosed with dementia , one of the effects is trouble/difficulty learning new things and solving problems.
It becomes very evident that even if you repeat them what to do several times, not only do they not show interest in it, they are struggling, too.
Offer a helping hand and together solve the task.
The last thing you would want to do is to start screaming and yelling at them.
Unfortunately, this is part of the progression of dementia. Instead, you should introduce all sorts of different dementia activities which will help keep their brain active.
Said that, keep them engaged in various exercises as often as possible for as long as possible. This will slow down the process of dementia, worsening their well-being.
How Is Dementia Caregiving Different
Only 26% of family caregivers help adults with elderly dementia, making them a minority even within the caregiving community. However, significant research on the demographic points to specific challenges, including level of intensity and length of care:
- Dementia caregivers are more likely to provide high-intensity care, according to the level of care index, a measure medical providers use to rate how much care a recipient needs. This means people who care for loved ones with dementia offer assistance with more activities of daily living and spend more time each day on caregiving than non-dementia caregivers.
- Dementia caregivers also report higher amounts of strain, mental and physical health problems, and caregiver burnout, according to a study of 1,500 family caregivers in The Gerontologist.
- More than half of dementia caregivers provide care for four years or more, significantly longer than family caregivers for people with other age-related diseases.
- People with elderly dementia typically require more supervision, are less likely to express gratitude for the help they receive , and are more likely to be depressed.
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Small Changes Can Make A Real Difference
We all have our own biases and vulnerabilities. Research has shown that stigma is best challenged through understanding and interaction. Instead of trying to end stigma, it is much more helpful to talk about realistic small changes. We want to connect with the person with dementia as an individual, rather than their symptoms.
Stigma is one of the factors that leads to caregiver isolation. For example, for the past few years a client of mine has been caring for his wife who has Alzheimers dementia. Several years ago, a friend told him that she would not visit because she didnt like sick people. A few years have passed since that conversation, and my client continues to carry feelings of rejection and shame. Even if his friend did not mean to hurt him, her comment sent the message that someone who is sick with dementia isnt worth spending time with, and my client experienced stigma by association.
Caregivers’ Experiences Of Advanced Dementia
Caring for a person with advanced dementia can evoke many different and powerful emotions. For example, it can feel unrewarding and upsetting to look after people who, for all intents and purposes, appear to live in another world. Unfortunately, for now there is no recovery from dementia and as such it becomes the job of caregivers whether as care staff or family carers to provide everything that the person with advanced dementia requires. These needs are far-reaching, from help with eating, to washing and dressing, to supporting the person with meaningful activity. The role is challenging and can often lead both family and professional caregivers to become burnt out .
I enjoy my job but it can be very stressful.
In this feature, we look at the challenges and in particular the challenges posed by communication difficulties for family members and care staff who are involved in supporting a person with advanced dementia.
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Social And Economic Impact
Dementia has significant social and economic implications in terms of direct medical and social care costs, and the costs of informal care. In 2015, the total global societal cost of dementia was estimated to be US$ 818 billion, equivalent to 1.1% of global gross domestic product . The total cost as a proportion of GDP varied from 0.2% in low- and middle-income countries to 1.4% in high-income countries.
Support For Family Caregivers Is Important For Their Well
Part of living well with Alzheimers is adjusting to your new normal and helping family and friends do the same. Adequate support resources are vital for the individual providing the majority of the care. Experts say that a safety net of support can actually reduce anxiety for caregivers by increasing the perception that resources are available to help handle the stressful situations.
Support can be found in many different forms, including the help of other family members and close friends, partnerships with health professionals, community resources and other useful tools such as support groups, respite care, help lines, online training assistance and outside professional care.
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Dementia In The Family: The Impact On Carers
Our report shines a spotlight on the daily challenges of caring for a loved one who has dementia.
Our report explores the experiences of people who are caring for family members with dementia, highlighting the heavy toll the condition can take on family carers. Dementia in the Family: The impact on carers shines a spotlight on the daily realities for these people, which are shared by many of the 700,000 people in the UK who are caring for a loved one with dementia.
In-depth interviews with the carers reveal how dementia changes family relationships, leaves people socially isolated, and affects both the health and finances of family carers. All too often, family carers sacrifice their own well-being to ensure their loved one has the best care possible. Their experiences underline the urgent need for research to make breakthroughs possible.
Help For Dementia Caregivers
In order to care for your loved one, you need to care for yourself. If youre struggling with dementia care or experiencing caregiver burnout, check out these resources:
- Learn about the benefits of asking for help with this list of respite care resources
- See if it may be time to explore memory care by answering these 12 questions.
- Get tips on how to support your loved one who wants to age in place with dementia
- Understand what to expect in the future with a guide to the seven stages of dementia
- Connect with other dementia caregivers with these caregiver support groups
American Psychological Association. The High Cost of Caregiving.
Centers for Disease Control and Prevention. Caregiving for Family and Friends A Public Health Issue.
National Alliance of Caregiving and AARP. Caregiving in the U.S.
St. Louis University. Caregiver Health: Health of Caregivers of Alzheimers and Other Dementia Patients.
University of Pittsburgh. Physical and Mental Health Effects of Family Caregiving.
University of Rochester. Issues in Dementia Caregiving: Effects on Mental and Physical Health, Intervention Strategies, and Research Needs.
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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.
Involving Family And Friends In Activities In Care Homes
Many activity organisers in care homes have discovered the benefits of involving carers in activities in the home, whether it is escorting residents on a trip out or helping to serve food and drinks at a special event. Involving families and friends may actually make your job easier and create more of a community spirit in your service.
Involving relatives and friends does need some forethought and planning. For example, are you asking the carer to help with looking after their own relative or friend for a specific activity or could they be a more general volunteer or helper?
Many family members and friends are keen to help where they can, especially when they see the benefits of activities for their own relative or friend. However, you need to check whether they feel they have the time and commitment to get involved and how often they might be able to offer this.
Some visitors might not be able to give their time but could have other things to offer, for example collections of music or DVDs to lend, fabrics, wool or hats for activity groups or contacts with community groups such a local church or golf club.
As with all volunteering, you are more likely to keep families and friends involved if you remember the following:
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Physical Health Dangers Of Caring For Someone With Dementia
There are fewer studies examining physical health risks in those caring for a loved one with dementia. However, in general, nearly one in four caregivers feel that their responsibilities have made their physical health worse. That number surges for caregivers who report loneliness nearly half of lonely caregivers feel their health has been negatively affected. Chronic conditions, persistent caregiver stress, and disregard for personal health all contribute to the physical impact of dementia caregiving.
Major Health Risks For Dementia Caregivers
Each year, more than 16 million Americans provide unpaid care for loved ones with Alzheimers disease or other dementias, according to the Centers for Disease Control and Prevention. While caregiving may be necessary and rewarding, it can also lead to health risks for family caregivers. In fact, poor caregiver health is one of the top reasons families seek senior living.
If you care for an aging relative with dementia, be aware of the physical and emotional tolls you face. Remember to monitor your own health in addition to your loved ones.
Learn how caring for someone with dementia differs from non-dementia caregiving, six common health consequences of family caregiving, and resources to help safeguard your well-being.
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Dont Forget The Children And Teens
With so much focus on the person who has dementia, sometimes younger family members donât get the attention they need, or the illness is not explained in a way they can understand.
Children often experience a wide range of emotions when a parent or grandparent has Alzheimerâs disease. Younger children may be fearful that they will get the disease or that they did something to cause it. Teenagers may become resentful if they must take on more responsibilities or feel embarrassed that their parent or grandparent is âdifferent.â College-bound children may be reluctant to leave home.
Reassure young children that they cannot âcatchâ the disease from you. Be straightforward about personality and behaviour changes. For example, the person with Alzheimerâs may forget things, such as their names, and say and do things that may embarrass them. Assure them that this is not their fault or intentional, but a result of the disease.
Find out what their emotional needs are and find ways to support them, such as meeting with a counsellor who specializes in children with a family member diagnosed with Alzheimerâs disease. School social workers and teachers can be notified about what the children may be experiencing and be given information about the disease. Encourage children and teens to attend support group meetings, and include them in counselling sessions.
Here are some examples that might help you cope with role changes within the family: