Area Of Focus 4: Improve Support For Family/friend Caregivers Including Through Access To Resources And Supports
Often, family members, neighbours and friends care for someone living with dementia, and organize the care delivered by others. These caregivers help with the essential activities of daily living and help keep the person living with dementia engaged in activities. Caregivers can spend approximately 26 hours per week caring for a person living with dementia. Footnote 71 This represents a significant amount of the caregiver’s time, and often their own needs go unnoticed or unmet. Footnote 72
The significant physical, mental and financial impacts of caring for an individual living with dementia must be addressed. Caregivers experience high levels of stress and are at higher risk of injury and depression. They are susceptible to financial and employment difficulties, particularly those caring for a person diagnosed with young onset dementia. Some men may view themselves as being in a reversal of a traditional gender role as a caregiver and may be reluctant to seek help. Caregivers are essential members of the care team improving support for them is integral to improving the quality of life of the person they are caring for and to ensuring their own health.
Mental and physical health
Text box 13: Respite care
Respite care provides caregivers with mental and physical relief. It allows the caregiver some time to themselves for self-care. This period of rejuvenation allows them to continue providing quality care for the person living with dementia when they return.
Key Points To Remember
- People with Alzheimer’s or other dementia need a safe, structured environment. You may be able to provide this at home. In other cases, long-term care in a centre is a better choice.
- People with dementia usually need more and more care as time goes by. At some point, your relative will most likely have to be moved to a long-term care centre.
- A care centre may offer your loved one some people to talk to plus activities and outings. These social contacts may keep him or her active for as long as possible.
- Caring at home for someone who has dementia takes a lot of time and work. It also costs money if you hire part-time help. Caring for a loved one at home also may take time away from other areas of your life. Every family has different needs and limits to think about.
- Remember that your own health, both physical and emotional, is as important as that of the person you’re caring for.
Discussing Chronic Diseases And Subjective Cognitive Decline
Figure 7: Adults aged 45 years and older with one or more chronic diseases and subjective cognitive decline who reported discussing their subjective cognitive decline with a health care professional
d.Limited Sample size refers to the low number of telephone participants included in the BRFSS study which reduces quality of study results.
Have you or anyone else discussed your confusion or memory loss with a health care professional?
Although nearly half of adults aged 45 and older with more than one chronic disease and subjective cognitive decline reported discussing their subjective cognitive decline with a health care professional, adults without chronic diseases were less likely to discuss symptoms of SCD with a health care professional.
The disparity between those with and without chronic diseases who discussed symptoms of SCD with a health care professional appears greater among middle-aged than older adults. Among adults aged 4564, 54.2% of those with at least one chronic disease reported discussing symptoms of SCD with a health care professional while only 30.8% of those with no chronic diseases reported discussing SCD with a health care professional. Among adults aged 65 years and older, 41.0% of those with one or more chronic disease discussed SCD while 32.3% of those with no chronic diseases discussed SCD.
- People with SCD are more likely to have multiple co-morbid chronic diseases which can complicatemanagement.
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What Are The Implications
This study shows that significant numbers of people with dementia have conditions such as stroke, diabetes and vision impairment. It found that dementia complicates the delivery of appropriate services and magnifies the difficulties that people with long-term conditions experience. It also shows that systems are not currently designed to involve carers to the degree they should be.
The authors suggest the impact of a diagnosis of dementia on pre-existing conditions should be incorporated into care planning and guidelines such as for diabetes and stroke management. They also recommend such things as dementia training for staff at all levels, and longer appointments for people with dementia in both primary and secondary care. Furthermore, an awareness that people with dementia plus other conditions that do not have support may need additional assistance.
This study is featured in an NIHR Dissemination Centre Highlight on support for dementia carers, bringing together a range of research projects funded by NIHR.
What Is Dementia Symptoms Types And Diagnosis
Dementia is the loss of cognitive functioning thinking, remembering, and reasoning to such an extent that it interferes with a person’s daily life and activities. Some people with dementia cannot control their emotions, and their personalities may change. Dementia ranges in severity from the mildest stage, when it is just beginning to affect a person’s functioning, to the most severe stage, when the person must depend completely on others for basic activities of living.
Dementia is more common as people grow older but it is not a normal part of aging. Many people live into their 90s and beyond without any signs of dementia.
There are several different forms of dementia, including Alzheimers disease. A persons symptoms can vary depending on the type.
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Making The Case For Action
People are now living far longer, but extra years of life are not always spent in good health. Theyre more likely to live with multiple long-term conditions or live into old age with frailty or dementia.
NHS Long Term Plan
The NHS Long Term Plan commits to further improving the care for people with dementia, identifying dementia as an improvement priority. It aims to improve the care provided to people with dementia and delirium, whether they are in hospital or at home.
The National Collaborating Centre for Mental Healths dementia care pathway outlines how services can ensure that people with dementia or mild cognitive impairment get timely access to a diagnosis and evidence-based post-diagnostic support and treatment. A key element of the dementia care pathway is the delivery of high-quality, NICE evidence-based recommendations in each phase of the well pathways: preventing well, diagnosing well, supporting well, living well and dying well.
What Else Do You Need To Make Your Decision
Check the facts
- Sorry, that’s not right. People who have dementia need a safe place. You may be able to provide this at home, especially early in the illness. In other cases, a care centre is a better choice.
- That’s right. People who have dementia need a safe place. You may be able to provide this at home, especially early in the illness. In other cases, a care centre is a better choice.
- It may help to go back and read “Get the Facts.” People who have dementia need a safe place. You may be able to provide this at home, especially early in the illness. In other cases, a care centre is a better choice.
- That’s right. Care centres provide different levels of medical care, help with daily living, programs, and support. The quality and costs of care vary widely.
- No, that’s not right. Care centres provide different levels of medical care, help with daily living, programs, and support. The quality and costs of care vary widely.
- It may help to go back and read “Get the Facts.” Care centres provide different levels of medical care, help with daily living, programs, and support. The quality and costs of care vary widely.
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Area Of Focus : Promote And Enable Early Diagnosis To Support Planning And Action That Maximizes Quality Of Life
Timely communication of symptoms to health professionals together with greater confidence among primary care practitioners in diagnosing dementia early are key to maximizing the quality of life for people living with dementia. The many benefits of receiving an early diagnosis include:
- Individuals and their friends and family members can seek information sooner to better understand what to expect and how to prepare. This learning process can help to reduce stress levels and provide a sense of control and direction.
- Therapies, services and supports can be accessed earlier, which can help to reduce the severity of symptoms. For example, having access to proper visual or hearing aids has been associated with improved cognitive function in those diagnosed with dementia. Footnote 53, Footnote 54 Support groups can help individuals feel socially connected, give a sense of belonging and purpose, and provide a safe place to seek advice and encouragement.
- Increased time for individuals to develop advance care plans, and communicate their preferences for care to their families and care providers.
Activities to promote and enable early diagnosis to support planning and action that maximizes quality of life may include:
Text box 10: Guidelines for diagnosing dementia in Canada
What Did It Find
The review found:
- People with dementia have quite high rates of comorbidity based on 31 different studies. An estimated 13-20% of people with dementia have diabetes, and 16-19% have stroke.
- People with dementia had poorer access to services than those without dementia.
- There was lack of healthcare system continuity for people with dementia and comorbidity, with little integration or communication between different teams and specialties.
Analysis of the database found:
- 17% of people with dementia had diabetes, 18% had experienced a stroke and 17% had some form of visual impairment.
- There has been an increase in unpaid care and hospital use over the past ten years.
This information came from six England / Wales regions only, so there is a need for new population-based data.
The interviews and focus groups found:
- Communication was often poor and without a standardised approach to sharing information about a personâs dementia and how it might affect the management of other conditions.
- Providing continuity of care and access to care was important.
- Systems are not designed to involve family carers in decision-making.
- Healthcare professionals reported not routinely involving carers in appointments or decision-making processes.
- There is a lack of guidance for health professionals for making decisions about care, for example weighing up the risks and benefits of treatment.
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Chapter : National Objective: Improve The Quality Of Life Of People Living With Dementia And Caregivers
The quality of life of those living with dementia and caregivers is the motivation for the national dementia strategy. In 2015â16, over 419,000 Canadians aged 65 years and older were living with diagnosed dementia. Footnote 49 In 2012, approximately 8.1 million individuals, or 28% of Canadians aged 15 years and older, were family/friend caregivers for a person with a long-term health condition, disability or aging needs. Footnote 50 Of these caregivers, approximately 486,000 were caring for an individual with dementia. Footnote 51 With the aging population, the number of caregivers is expected to grow.
While recognizing the importance of funding for health care, social services and other types of resources, 5 areas of focus will support improving the quality of life of people living with dementia and caregivers.
- 4.1 Eliminate stigma and promote measures that create supportive and safe dementia-inclusive communities
- 4.2 Promote and enable early diagnosis to support planning and action that maximizes quality of life
- 4.3 Address the importance of access to quality care, from diagnosis through end of life
- 4.4 Build the capacity of care providers, including through improved access to and adoption of evidence-based and culturally appropriate guidelines for standards of care
- 4.5 Improve support for family/friend caregivers, including through access to resources and supports
Dementia In Younger People
People whose symptoms started when they were under the age of 65 are often known as younger people with dementia or as having young-onset dementia. This is not for a biological reason, but is based on the fact that 65 was the usual age of retirement for many people.People sometimes use the terms early-onset dementia or working-age dementia. This information uses the term young-onset dementia.
Dementia is caused by a wide range of different diseases. This is similar for younger and older people , but there are important differences in how dementia affects younger people. These include the following:
- A wider range of diseases cause young-onset dementia.
- A younger person is much more likely to have a rarer form of dementia.
- Younger people with dementia are less likely to have memory loss as one of their first symptoms.
- Young-onset dementia is more likely to cause problems with movement, walking, co-ordination or balance.
- Young-onset dementia is more likely to be inherited this affects up to 10% of younger people with dementia.
- Many younger people with dementia dont have any other serious or long-term health conditions.
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Strategies To Improve Long
There are several ways you can improve your long-term memory. When trying to store new information in your long-term memory, it helps to repeat it several times and pay full attention. It also helps to attach meaning. For example, try to link new information with something you already know and understand. This is known as elaborative rehearsal.
Teaching information to others is another very effective way to get knowledge into your memory and remain there since it requires you to understand it and then express it well to someone else.
Using mnemonic strategies can also help improve your ability to learn and then later recall a memory.
Psychological And Psychosocial Therapies
Psychological therapies for dementia include some limited evidence for reminiscence therapy , some benefit for cognitive reframing for caretakers, unclear evidence for validation therapy and tentative evidence for mental exercises, such as cognitive stimulation programs for people with mild to moderate dementia. Offering personally tailored activities may help reduce challenging behavior and may improve quality of life. It is not clear if personally tailored activities have an impact on affect or improve for the quality of life for the caregiver.
Adult daycare centers as well as special care units in nursing homes often provide specialized care for dementia patients. Daycare centers offer supervision, recreation, meals, and limited health care to participants, as well as providing respite for caregivers. In addition, home care can provide one-to-one support and care in the home allowing for more individualized attention that is needed as the disorder progresses. Psychiatric nurses can make a distinctive contribution to people’s mental health.
Some London hospitals found that using color, designs, pictures and lights helped people with dementia adjust to being at the hospital. These adjustments to the layout of the dementia wings at these hospitals helped patients by preventing confusion.
Cognitive training
Personally tailored activities
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Challenges Of Caring For Seniors With Dementia In Long
Within long-term care homes, 69% of residents had dementia in 20152016. The proportion of those having any form of cognitive impairment was 87%.
The population in long-term care has changed rapidly over the past 5 years to be the population with moderate to severe dementia. What we know now is that if you are in long-term care, you have cognitive impairment, said Cooper.
It can be quite challenging to provide care for residents with dementia in long-term care homes. In addition to severe cognitive impairment , 50% had responsive behaviours, 31% had signs of depression and 82% required extensive assistance or were dependent for activities of daily living.
Populations Facing Barriers To Equitable Care:
Ethnic and cultural minority communities
Cultural differences in the understanding of and views toward dementia can result in a reluctance to talk about symptoms and may lead to under-diagnosis and difficulty connecting with networks of support that are useful following diagnosis. Understanding the impacts of dementia among ethnic minority populations is limited in Canada however, studies from other countries have shown that ethnic minority people living with dementia and caregivers face difficulties in accessing care and support due to systemic racism and socio-economic marginalization. Footnote 94 A lack of information about dementia in their first language, as well as insufficient access to culturally safe and culturally appropriate dementia care can be barriers to diagnosis and treatment.Footnote 95
Lesbian, gay, bisexual, transgender, queer, two-spirit
Official language minority communities
Rural and remote communities
Evidence shows that rural populations are aging more rapidly than urban populations due to youth outmigration and seniors retiring to rural communities. Footnote 101 People living in rural and remote communities may face social and geographical isolation.
Young onset dementia
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Why It’s Important To Get A Diagnosis
Although there is no cure for dementia at the moment, an early diagnosis means its progress can be slowed down in some cases, so the person may be able to maintain their mental function for longer.
A diagnosis helps people with dementia get the right treatment and support. It can also help them, and the people close to them, to prepare for the future.
Read more about how dementia is diagnosed.
How Is Dementia Diagnosed
To diagnose dementia, doctors first assess whether a person has an underlying, potentially treatable, condition that may relate to cognitive difficulties. A physical exam to measure blood pressure and other vital signs, as well as laboratory tests of blood and other fluids to check levels of various chemicals, hormones, and vitamins, can help uncover or rule out possible causes of symptoms.
A review of a persons medical and family history can provide important clues about risk for dementia. Typical questions might include asking about whether dementia runs in the family, how and when symptoms began, changes in behavior and personality, and if the person is taking certain medications that might cause or worsen symptoms.
The following procedures also may be used to diagnose dementia:
Early detection of symptoms is important, as some causes can be treated. However, in many cases, the cause of dementia is unknown and cannot be treated. Still, obtaining an early diagnosis can help with managing the condition and planning ahead.
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