What Can You Do If Dementia Is Diagnosed
At first, this may come as a shock and feel like the most devastating news, says Danuta. Unlike other long-term conditions, dementia affects our unique abilities to be in charge of ourselves, our relationships and our everyday lives.
But that doesnt mean the essential person is no longer there. They are, but they may need more time for the brain to process information and to make sense of the world and their everyday lives. They may become focused in the moment and need patience and support to retrieve information stored away in the brain.
People diagnosed with dementia are not only able to live well, but can develop new hobbies, skills and abilities. Danuta says: Because most dementias take many years to develop, there’s time to learn as much as we can and put things in place for the future that may otherwise cause anxiety and distress.
Listen And Pay Attention To Queues
Caregivers will often say you need to listen with your whole body when it comes to caring for someone with dementia. This means that many of their responses may be non-verbal, so you cant simply rely on them answering your question or responding in a straightforward way. By listening with your ears, eyes, and heart, you can pick up on these queues that can tell you what they are feeling or trying to say. Their behaviors and movements may tell you a lot more than what actually gets saidusually not much in the later stages where speech is severely affected.
Its important as a caregiver to not take irritation and sometimes aggressive behaviors personally. This is often a sign of frustration and confusion about what is going on or why certain things are harder to do or remember. Reacting to aggressive behavior with kindness and compassion, and remembering that this behavior really isnt targeted at you personally, will help both the person with dementia and the caregiver better cope with this challenging time.
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How Can Dementia Counselling Help
There is plenty of advice available for families dealing with dementia. The problem with the advice found in books, leaflets and online, is that it is very general. Dementia is inconsistent by nature – what works one day might not work for the next and, unfortunately, everyone can be affected differently.
For this reason, it can be beneficial to have an expert work with you to get to grips with the unique patterns of your own, or your loved ones, condition.
Overview Of Structural Ecosystems Therapy
SET is a family-based intervention initially developed for the families of adolescent substance abusers, and adapted to enhance support for caregivers. SET is derived from a combination of two theoretical approaches: the structural/systemic approach and the ecosystemic approach .
As a systemic approach, the SET model views the behavior of family members as interdependent and repetitive. In some instances the repetitive patterns of family interactions may be maladaptive or obsolete, leading to symptoms such as caregiver distress. Other family patterns of interaction may be particularly adaptive and relieve caregiver burden. SET is particularly appropriate for minority families because it recognizes the importance of culture as a contextual variable which can have a pronounced influence on family interactions.
Generally, family interactional changes that are beneficial to the caregiver also benefit other family members . In fact, it is only through this mutual satisfaction that interactional changes can be maintained, since the absence of reinforcement on either side would cause the new interaction to be extinguished. There are cases in which primary caregivers have unreasonable expectations of family support. In such cases, the therapist seeks to balance the caregiver’s need for support while helping other family members to set limits on overwhelming demands from the caregiver.
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Psychological Models Of Caregiver Stress
The stress process model which depicts caregiver outcomes as determined by primary and secondary stressors , with mediators such as coping and social support, has dominated the field. Significant proportion of the variance in caregiver distress has been explained by employing this model . However, caregiver outcomes depend not only on objective factors such as the presence of neuropsychiatric symptoms, care hours and financial problems but also on subjective appraisal . For instance, many caregivers think that the problem behaviors are under the CRs control , who would likely be more upset than others who attribute the behaviors to the disease. On the contrary, caregivers with certain frames of mind are more inclined than others to find positive gains despite hardship, such as a sense of purpose, increased closeness with the CR, and feelings of mastery and gratification . These appraisals may be related to cognitive vulnerabilities such as dysfunctional thoughts . Further supporting the cognitive model, research has suggested that self-efficacy in controlling upsetting thoughts, rather than self-efficacy in managing disruptive behaviors or in obtaining respite, is an important predictor of caregiver outcomes, including being a primary mechanism of change in psychological interventions based on the cognitive model .
Benefits Of Talking Therapies For People With Dementia
Talking therapies can be effective for people in the early to middle stages of dementia. Talking therapies are unlikely to help if a person is in the later stages. This is because they are likely to have problems with their attention, communication, understanding and memory, which are all key to being able to benefit from talking therapies. However, there are other ways to support people in the later stages of dementia, such as through sensitive listening or sensory stimulation. See our advice on communicating in the later stages of dementia.
Talking therapies can give a person with dementia the chance to speak openly about their feelings, including how they feel about a recent diagnosis. This can help them adjust and live with their condition more successfully. They might find it helpful to discuss problems with a therapist rather than their friends or family members. A therapist can give them a safe space to explore the reasons why they feel how they do. This can be comforting. It can also help them maintain healthy relationships with their friends and family members.
There is evidence that having talking therapy over several weeks may reduce depression and anxiety in people in the early stages of dementia. The therapy needs to be adapted to the persons level of communication, understanding and memory. Its therefore likely to be most effective if the therapist has experience of working with people with dementia as well as a good understanding of the condition.
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Caregiving In The Late Stages Of Alzheimers Or Dementia
As Alzheimers or another dementia reaches the late stages, your loved one will likely require 24-hour care. They may be unable to walk or handle any personal care, have difficulty eating, be vulnerable to infections, and no longer able to express their needs. Problems with incontinence, mood, hallucinations, and delirium are also very common.
In your role as caregiver, youll likely be combining these new challenges with managing painful feelings of grief and loss and making difficult end-of-life decisions. You may even be experiencing relief that your loved ones long struggle is drawing to an end, or guilt that youve somehow failed as a caregiver. As at the other stages of your caregiving journey, its important to give yourself time to adjust, grieve your losses, and gain acceptance.
Since the caregiving demands are so extensive in the later stages, it may no longer be possible for you to provide the necessary care for your loved one alone. If the patient needs total support for routine activities such as bathing, dressing, or turning, you may not be strong enough to handle them on your own. Or you may feel that youre unable to ease their pain or make them as comfortable youd like. In such cases, you may want to consider moving them to a care facility such as a nursing home, where they can receive high levels of both custodial and medical care.
Connecting in the late stages of care
How Do Talking Therapies Work
Talking therapy sessions are delivered by a professional, such as a counsellor, a clinical or counselling psychologist, a psychotherapist, or a psychiatrist. People can have some types of talking therapy over the telephone or online. This includes counselling and cognitive behavioural therapy .
The approach to therapy will be adapted to each person. It will be based on them and the therapist working together to find out what might be causing the persons problems, as well as ways to manage these problems.
Successful therapy depends on developing a trusting relationship between the person and the therapist. It is important that the person is comfortable with the therapists approach and manner. Their relationship is confidential. This means the therapist wont tell anyone what they discuss during therapy. There are some exceptions to this, which the therapist should explain during the first meeting. For example if the person with dementia gives their consent, they may be accompanied and supported in the sessions by a family member.
Listen to our helpsheet below for a summary of talking therapies and the other main non-drug treatments for dementia:
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Make Time For Reflection
At each new stage of dementia, you have to alter your expectations about what your loved one is capable of. By accepting each new reality and taking time to reflect on these changes, you can better cope with the emotional loss and find greater satisfaction in your caregiving role.
Keep a daily journal to record and reflect on your experiences. By writing down your thoughts, you can mourn losses, celebrate successes, and challenge negative thought patterns that impact your mood and outlook.
Count your blessings. It may sound counterintuitive in the midst of such challenges, but keeping a daily gratitude list can help chase away the blues. It can also help you focus on what your loved one is still capable of, rather than the abilities theyve lost.
Value what is possible. In the middle stages of dementia, your loved one still has many abilities. Structure activities to invite their participation on whatever level is possible. By valuing what your loved one is able to give, you can find pleasure and satisfaction on even the toughest days.
Improve your emotional awareness. Remaining engaged, focused, and calm in the midst of such tremendous responsibility can challenge even the most capable caregivers. By developing your emotional awareness skills, however, you can relieve stress, experience positive emotions, and bring new peace and clarity to your caretaking role.
Preserving Your Loved Ones Independence
Take steps to slow the progression of symptoms. While treatments are available for some symptoms, lifestyle changes can also be effective weapons in slowing down the diseases progression. Exercising, eating and sleeping well, managing stress, and staying mentally and socially active are among the steps that can improve brain health and slow the process of deterioration. Making healthy lifestyle changes alongside your loved one can also help protect your own health and counter the stress of caregiving.
Help with short-term memory loss. In the early stages, your loved one may need prompts or reminders to help them remember appointments, recall words or names, keep track of medications, or manage bills and money, for example. To help your loved one maintain their independence, instead of simply taking over every task yourself, try to work together as a partnership. Let your loved one indicate when they want help remembering a word, for example, or agree to check their calculations before paying bills. Encourage them to use a notebook or smartphone to create reminders to keep on hand.
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Narrow Options Based On Availability And Cost
Now you want to start getting in touch to find out what kind of availability they have and what they charge. If there are one or two therapists that you especially like the look of, start with them and find out if they can fit you into their calendar at times that work for you and if they offer a rate you can afford.
Tips For Finding The Right Therapist For Alzheimers Caregivers
6 Tips for Finding the Right Therapist for Alzheimers Caregivers
Watching the symptoms of Alzheimers take a toll on a senior loved one is upsetting. Many Alzheimers caregivers end up feeling depressed, exhausted or frustrated, which can lead to other chronic health issues. Research has found, however, that therapy can help to protect the health of Alzheimers caregivers.
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Lewy Body Dementia Association
Key Specs
- Membership fee: Most groups are free, some may collect voluntary donations
- Structure:Online, phone, video conferencing
- Details: Offers support groups specifically for spouses and has active Facebook support groups.
- Things to consider: Support groups are not available in all states
Lewy Body Dementia is a condition involving abnormal protein deposits in the brain called Lewy bodies. These deposits affect brain chemical levels, which may result in abnormal thinking, movement, and behavior, as well as mood disorders.
Lewy Body Dementia Association offers several types of virtual groups, internet discussion forums, and more. Its offers virtual, meetings for anyone living with LBDeven those who are not yet diagnosed but are seeking information.
If you’re seeking a combined support group for people diagnosed with Lewy body dementia and their care partners, Living Together with Lewy is another Facebook group that is available. This one aims to help those who are newly diagnosed, people with early symptoms of the condition, and others who are seeking advice around a possible diagnosis.
LBDA also offers an online support group if you have a spouse with Parkinsons disease dementia or Lewy body dementia : LBD Caring Spouses.
Uniqueness Of The Counsellor
Direct discussion with the counselling practitioner revealed some personal attributes which shaped the course of the intervention and provided the basis for relationship building with clients.
3.1.1 Practice philosophy
Central to the counsellorâs philosophy to delivering therapy was the underpinning relational approach, applying this to both people living with dementia and their family members in counselling. This consists of modalities that throw light on a different dynamic of interpersonal relationships. There is a focus on the therapeutic relationship, and the key principles of this approach consist of the following:
The relational approach is therefore perhaps best considered as a framework that is considered central to virtually all approaches .
I work with people in the room, whateverâs in the room. So I do work relationally. But⦠there might be times that itâs definitely client-led, there might be times thereâs a bit of TA in there, it really just depends on that client.
3.1.2 Client-influenced understanding
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How Can Talking Therapies Help Carers
Dementia is a complex, unpredictable and progressive condition. As a result, caring for a person with dementia is unlike caring for a person with other conditions.
Caring can be very rewarding and fulfilling. It can also be very stressful, particularly if there are no or few other people who can help. You may suppress your feelings to protect the person youre caring for and become socially isolated and sleep-deprived. This reduces the ability to cope with negative feelings and stress. As a result, it is common for carers to feel anxious and depressed.
When you are caring for a person with dementia its important that you look after yourself and take regular breaks. For more information see our booklet 600, Caring for a person with dementia: A practical guide.
Carers- looking after yourself
Speak Clear And Direct
To make sure they can understand what youre saying, even if they are pretty well cognitively, speak slowly and in a clear tone. It can take a few times for them to understand you, and if thats the case, try saying the same thing in a different way. Also, make sure you clearly state names , places, and what you will do.
For example, instead of Your son is here to visit. Why dont you go sit with him for a while, try Your son, Gary, is here to visit with you. Lets sit on the couch next to Gary and chat for a while.
A dementia diagnosis does not automatically mean there is hearing loss. Using loud voices when there isnt a hearing impairment can be condescending and lead to irritation.
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Should I Get Counseling If I Have Been Diagnosed With Alzheimer’s Disease
Alzheimers disease, like many chronic illnesses, affects you physically, emotionally and mentally. It also affects your family, friends or other caregivers.
It is important to realize that you are not alone. If you feel you need help coping, or your healthcare provider feels that you or your caregiver need help coping, please consider seeking counseling.
To achieve the highest quality of life, seek counseling as soon as possible after your diagnosis. Counseling helps you:
- Gain insights into your behavior
- Make choices to change some behaviors
- Learn how your behaviors and disease affect others around you
The decision to seek counseling is not an easy one. Too often, people do not get help because they feel guilt, shame or embarrassment. Counselors are well skilled to help you work through your emotions. Counselors help you understand your disease, manage your grief and other emotions, and provide a realistic picture of future challenges you and your caregivers may face. Working with a trained mental healthcare provider will help you and your loved ones develop a comprehensive plan to meet your current and future needs.