This adjustment process does not always occur in clearly defined stages and is influenced by the following
Caregiving
The caregiving role varies with different members of the family. The role of a spouse is different from that of a grandchild. The feelings experienced by a daughter or son are different from those of a spouse.
Caregivers should make a list of relationships and discuss how the person’s role and relationship to the client with Dementia may differ. For example:
Spouse
Aduld Child - Long Distance Caregiver
Grandchild
Extended Family
Friends
Careworkers need to be aware of the family situation of their clients. Family can be a valuable resource for supporting the careworker.
Acknowledging the Experiences of Family Members
Family Experiences A:
Family members can react in unique and individual ways when a loved one is diagnosed with Dementia. The most common reactions are outlined below:
Denial
Over InvolvementAnger
Reflects the initial response that nothing is wrong. Denial is a natural reaction; can prevent a family from seeking help; can create family conflict. Helpful Interventions: Provide accurate information on Dementia when appropriate; Listen without judging; Do not assume person is in denial. There may be a lack of information amongst family members.
The primary caregiver may try to meet all the needs of the person with memory loss and refuse help from everyone; caregiver believes they are helping; can create a barrier to getting further help. Helpful Interventions: Involve family member in care and care planning; Encourage family member to express painful feelings such as guilt, loss and anger.
Resulting from the physical, emotional, financial burden of providing care. Can stem from feelings of loss and abandonment. Angry feelings can cause guilt. Helpful Interventions: Discuss anger at the disease rather than at people. Encourage interaction with other families going through the experience. Listen without judging or taking sides. Encourage caregiver to take some time for his/her self.
Family Experiences B:
Guilt
AcceptanceA feeling that comes from a sense of wrongdoing in words, actions or thoughts. Guilt can come from: Old conflicts; Placement and other tough decisions; Feeling like you “have not done enough”. Helpful Interventions: Learn about guilt and how it affects clients' families; Encourage caregiver to talk about guilty feelings if appropriate.
This is possible when the process of the disease and its effect on others is fully understood. Remember, families can still revert to earlier stages of adjustment. Helpful Interventions: Enable caregiver to see setbacks as temporary; Encourage caregiver to pursue personal interests and hobbies; Encourage involvement in care (if appropriate) and continue to ask their help/support on issues of caregiving.
Family Concerns
It is important that both families and caregivers can develop strategies that help them to cope with caring for the client with Dementia. Effective strategies are outlined below:
- Learn about Alzheimer’s to understand what is happening to the client with Dementia.
- Develop realistic expectations about the future.
- Accept past mistakes. Learn from them and go on.
- Become aware of your own mental and physical reactions to stress.
- Accept and enjoy your successes and breakthroughs, but accept that they are temporary.
- Accept your own feelings of frustration or anger at the person with Alzheimer’s.
- Realize that taking out these feelings on the person with Alzheimer’s is not appropriate.
Families feel particularly helpless and guilt-ridden when they turn over the care of a loved one to others in a directed care setting. Of course, part of them knows that this is best for the person with Alzheimer’s, but another part believes that they could/should do more.
When a client is placed in a directed care setting, both the resident and family struggle to develop new roles and adapt to new settings. Some concerns are outlined below:
- Concern about someone else being a parent to their parent.
- Concerns about the community condemning their decision to place their family member in a directed care setting.
- Concerns about the care their loved ones will receive.
- Concerns about the loved one suffering/being distressed and not being able to report it.
- Grieving for the abilities that their loved one has lost.
- Concern about the future for their loved one.
NOTE: Family members may be worried that they too will get Alzheimer’s one day and witnessing the disease may exacerbate this concern. This is a legitimate concern as Alzheimer’s does occur more often in members of the same family. Other risk factors are if the individual is over 60, female or has had a previous head injury.
Traits for Dealing with Families
Caregivers can be a valuable asset for families throughout the difficult process of a loved one being diagnosed with Dementia. Follow the steps outlined below to ensure that you have the skills to help a family through such a difficult time:
Be Yourself
- Remember that you do this job to help people.
- Approach family members in a friendly and relaxed way.
- Don’t tell them you are overworked or too busy.
- Share problems and successes you are having with their loved ones and ask their advice.
Be a Good Listener
- Pay attention to what they say and what they do.
- Repeat what they say back and ask them to clarify it.
- Ask questions and listen to answers.
- Don’t take complaints personally.
- Empathize - “It’s very understandable to be upset in this situation.”
- Let them help with care and offer suggestions.
- Encourage them to attend a support group.
- Talk about their loved one as if you are a part of their family.
- Ask the family to tell you about the person before the illness.
- Talk with the family about the good times.
- Develop a committee to plan family/staff activities, such as dinners.
- Write notes to the family.
- Remember a spouse’s birthday and anniversary with a card.
- When the resident passes on, send a sympathy card.
MODULE 8A SUMMARY
Dementia refers to a spectrum of brain disorders. These involve difficulty with memory and thinking, but they may vary in terms of cause, course and prognosis.
Symptoms of Dementia include: a decline in memory, thinking and reasoning; changes in personality, mood and behavior; difficulties communicating, recognizing people and places and engaging in activities. Alzheimer’s disease is the most common cause of Dementia. It is progressive and not reversible. Early recognition of the symptoms and diagnosis is important. When treating an Alzheimer’s patient with medication, remember that it should be administered for the benefit of the patient and not for staff convenience. Vascular or Multi-Infarct Dementia, is the second most common cause of Dementia, estimated to account for 20% of cases. It is caused by reduced blood flow to parts of the brain, often due to tiny strokes which block small arteries.
Fronto-Temporal Dementia causes personality and behavioral changes and loss of language function. Lewy Body Dementia is caused when abnormal protein deposits called Lewy bodies are left in the brain. Symptoms include hallucinations and memory loss. The early stage lasts for two to four years. It is characterized by forgetfulness, increasing difficulty with problem solving and withdrawing from activities. The middle stage is characterized by an increase in memory loss, confusion, shorter attention span, increase in language difficulties and repetitiveness. The late stage is a time of severe confusion and loss of all functional skills. The person has no awareness of his/her condition. This lasts for 1-3 years and ends in death. As a caregiver, take steps to safeguard your own health and well-being. This applies to the staff that provides care as well as to the family members.